Fibrillary Glomerulonephritis Questions
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Symptoms-Diagnosis
Somewhere around 2 ½ years ago, while having a physical done, it was explained to me by my primary care physician (pcp) that there was blood showing up in my urine for some reason. This phenomenon is called hematuria. Though I didn’t know what that meant at the time, and still am not 100% sure, I am learning as I go. A couple of other urine tests were done in order to rule out a bladder, UTI, or kidney infection. When the urine tests showed nothing, I was then sent to have an I.V.P. done. An I.V.P. involves having an I.V. put in and X-rays being done of the entire urinary system. Once the results of that came back and showed no problems, I was then sent to a urologist. The urologist had another couple of tests done, lots of blood and urine work, and then he did a cystoscopy/bladder scope.
What is Cystoscopy (Bladder Scope)?
Cystoscopy is a diagnostic test done so that the surgeon can see directly into the lower urinary tract (bladder and urethra). A lighted, tubular telescope-like instrument called a cystoscope is placed into the bladder through the urethra. This test is done for many reasons. It is to look for problems associated with bleeding or pain. It can be done to look for obstruction of the urinary tract or to look for stones. It can also be used to detect problems with the lining of the bladder. Water flows through the cystoscope so the surgeon can see the bladder, urethra and the insertion of the ureters into the bladder. X-rays may be done along with cystoscopy to look for different problems with the ureter or kidney.
Nothing was found during the cystoscopy, and the urologist wasn’t alarmed. He explained to me that some people just plain develop hematuria for no reason, and that we would just keep an eye on it. RIGHT.
I.V.P.- 1
Nothing Found Here
Nothing was found during the cystoscopy, and the urologist wasn’t alarmed. He explained to me that some people just plain develop hematuria for no reason, and that we would just keep an eye on it. RIGHT.
Prior to all of that, I really hadn’t had any problems warranting concern about any kidney problems. I hadn’t had any pain or discomfort, and afterwards, for about 8 or 9 mo. I still hadn’t. Since the new ostomy surgery, I do have some problems with holding my urine, but not on a painful level of any kind, unless they are due to adhesions. (An adhesion is a band of scar tissue that binds 2 parts of your tissue together. They should remain separate. Adhesions may appear as thin sheets of tissue similar to plastic wrap or as thick fibrous bands). Then, slowly, I began aching on a regular basis in my rib cage area. My P.C.P. again tested for hematuria and found my levels to be a little higher. He then sent me to a nephrologist. This is all close to 2 years from the original finding.
Laproscopic Transplant
Finally/ So Far
The nephrologist explained to me that it is NEVER okay to just let hematuria go without finding out why you have it. He told me that he had 3 or 4 tests he would do, and that if he found nothing there I should really have a kidney biopsy done. After about 2 weeks the biopsy was scheduled. I will not lie, it is a painful procedure, and it only took about 4 days for him to call me back into his office. When he first walked into the office he flat out told me things weren’t good. He told me that I had Fibrillary GN and that he was sending me to a specialist at Ohio State. I don’t think I heard much past the fact that “things aren’t good”. If he did explain it to me, I just didn’t hear it. So, having been a former nursing student, I went straight home and got on the internet. I had also emailed my “heard” results to my L.P.N. sister.
One of the things I remembered from my biology class was that one of the things your kidneys consist of are glomeruli. The glomeruli are filters within the kidneys. I knew only at that time that there was a problem with the filtering system in my kidneys.
*****Fibrillary glomerulonephritis (FibGN) is a rare cause of progressive renal dysfunction. The majority of patients who develop the disease require dialysis within a few years.
*****FibGN occurs in approximately 1% of renal biopsies and It is more common in caucasians with a peak incidence between the fifth and the sixth decades of life .
8)Rosenstock, JL; Markowitz, GS; Valeri, AM; Sacchi, G; Appel, GB; D'Agati, VD. Fibrillary and immunotactoid glomerulonephritis: Distinct entities with different clinical and pathological features. Kidney Int. 2003;63:1450–1461. doi: 10.1046/j.1523-1755.2003.00853.x. [PubMed]
11) Iskandar, SS; Falk, RJ; Jennette, JC. Clinical and pathologic features of fibrillary glomerulonephritis. Kidney Int. 1992;42:1401–1407. [PubMed]
12) Hvala, A; Ferluga, D; Vizjak, A; Koselj-Kajtna, M. Fibrillary noncongophilic renal and extrarenal deposits: a report of 10 cases. Ultrastruct Pathol. 2003;27:341–347. [PubMed]
****(2)Fibrillary Glomerulonephritis (GN)
· What is Fibrillary GN? · Who gets FIBRILLARY GN? · What are the Symptoms? · What Types of Tests Detect FIBRILLARY GN? · How is it Treated? · Clinical Trials
What is Fibrillary GN?
Fibrillary GN is a disease which affects the millions of filtering units that make up the kidney. These filtering units are called glomeruli. Each individual glomerulus is composed of multiple layers of straining material (endothelium, basement membrane, popdocyte foot processes) which assure only select components of the blood pass from the blood vessel walls (capillary lumen) into the urine. In this condition, for unknown reasons, the body produces a large volume of unusual proteins. These proteins enter the glomeruli (or they may be produced within the glomeruli), but because of their unusual nature become trapped in the straining layers, disrupting filtration. In some instances these proteins activate the immune system causing inflammation in these delicate structures. Over time the inflammation can damage the layers of the filters, as well as adjacent structures, allowing large amounts of proteins to spill into the urine. As the inflammation progresses filtering units are damaged beyond repair and replaced by scar tissue. Ultimately, with the loss of enough glomeruli, the kidneys loose the ability to filter the blood, a condition known as end-stage kidney disease.
Who gets Fibrillary GN?
Fibrillary GN has been reported in those age 10 to 89 and appears to affects Caucasions and a slightly higher rate. Because we do not know exactly what causes the disease, we can not predict who will develop it. Based on published reports, it appears there may be an association of this disease with conditions of immune system dysfunction, such as lupus, or those causing chronic immune system activation, such as Hepatitis C.
What are the symptoms?
Early on Fibrillary GN primarily affects the individual filtering units of the kidney. The symptoms that develop are linked to this initial sight of damage, and the subsequent passage of blood components into the urine. People commonly present with swelling in their legs or feet and foamy urine,due to a significant loss of protein in the urine (proteinuria). However, patients often develop proteinuria without swelling, and first become aware of their condition with the detection of proteinuria on routine urinalysis performed by their primary care doctor. Red blood cells may pass through the filters into the urine as well, though they are usually too few in number to be seen by the naked eye (microscopic hematuria). Blood identified by urinalysis should be confirmed by microscopic evaluation of the urine by a physician to be certain the blood identified is not from another source (ex. the bladder).
As damage to the kidney progresses, individual filtering units are lost, and as a consequence many patients develop high blood pressure, commonly requiring multiple medications for control. Patients may have difficulty managing their phosphorus balance (phosphorus is excreted by the kidney) and often suffer from anemia. This occurs as the kidney can no longer secrete a substance called erythropoietin, a hormone responsible for stimulating bone marrow production of red blood cells. Unfortunately, Fibrillary GN tends to be a progressive disease ultimately leading to loss of kidney function and the need for dialysis or kidney transplant. Symptoms of advanced kidney failure include nausea, fatigue, confusion, loss of appetite, funny taste in the mouth, itching, shortness of breath, or heart palpitations. The rate of decline is variable ranging from months to several years and should be followed closely by your doctor.
What Types of Tests Detect Fibrillary GN?
Early evidence of kidney damage from Fibrillary GN may be detected on routine lab tests. For example, urinalysis may identify protein or blood loss in the urine. Microscopic exam of the urine can identify other evidence of kidney involvement such as red blood cells that have passed through the kidney filters (glomeruli). Later in the course of the disease serum creatinine, a marker of kidney function, can elevate indicating loss of functioning glomeruli. However, as there are many conditions that can damage the glomeruli, the above findings are non-specific for Fibrillary GN. Ultimately, a definitive diagnosis of Fibrillary GN must be made by microscopic examination of kidney tissue obtained by kidney biopsy. Examination of the tissue by light-microscopy may show evidence of protein build up in the glomeruli, but electron-microscopy is ultimately needed to determine the precise nature of the captured proteins. As part of the evaluation a number of blood tests are often done to evaluate for other renal diseases (ex. HIV or Multiple Myeloma) or conditions associated with Fibrillary GN (ex. LUPUS or Hepatitis C).
What are the Treatment Options?
There is no proven effective therapy for Fibrillary GN at present, though many therapies have been attempted with limited success. Treatments used in the past have included immune modulating agents, alone or in combination, such as steroids, cyclophosphamide, and cyclosporine. In very specific cases, physicians have also tried plasmapheresis, a procedure in which the blood is filtered outside the body (like dialysis) in an attempt to remove proteins.The treatment course must ultimately be determined after testing for associated conditions, such as Lupus or Hepatitis, evaluation of kidney function, and a detailed review of the kidney biopsy findings. Use of immunomodulating agents must weigh the potential benefit of disease response versus the known risks of immune suppression, such as susceptibility to infection.
Clinical Trials
(2)http://www.unckidneycenter.org/kidneyhealthlibrary/fibrillarygn.html
Things immediately felt like I had been given a death sentence, though I am learning new things every day. It is all so confusing to me. Whenever I try to look up information on this disease, it never comes alone, it usually is paired with a couple other things. None of these other things were explained to me though. When I get back to O.S.U. hospital I will get more details about my actual condition.
What I do recall about my diagnosis is that I will eventually need a kidney transplant. These little fibers will begin to grow together in my kidneys, and my kidneys will no longer filter and function as they should. Something else I keep finding is that proteinuria usually preceeds hematuria. But to date, I am not showing, nor have shown, any signs of proteinuria. What this means is that the protein in the body isn’t being filtered by the kidneys as it should be. I am so confused.
Another thing I remember is the specialist asking me if I had ever had Hepatitis C or if I have Lupus. It seems that FGN is common in people who have or have had an autoimmune type disease. It usually occurs when the immune system has been compromised. Although I suffered a horrible bout with MRSA about 5 years ago from a shot in my knee, that fired through my blood and lungs, they are telling me that it didn’t have anything to do with it. ?? So I am constantly searching for further information about fibrillary glomerulonephritis. I am anxious to get back to the specialist and ask further questions, and maybe even get into some kind of research group.
My specialist explained to me that sometime in the near future I would inevitably be put on dialysis, and be in need of a kidney transplant. When, we’re not sure, as my disease is mysteriously progressing slower than expected. That’s okay with me though. Having a large family, you would think I would have options out there for a kidney transplant. But all but one of my siblings have children and even grandchildren of their own. I would never ask any of them to donate a kidney, simply because one of their descendants may need one some day. So I am left with a brother to ask. Unbeknownst to me, my siblings had secretly and lovingly discussed this already. And one day I got an email forwarded from my sister about the conversation, with my brother offering to do anything he could for me. Right now I am thinking about going ahead and having tissue match testing done, so that if or when the time comes, we will know. If my brother isn’t a match, I will be put on a kidney transplant list. I will stay on dialysis until a donor is found.
As of now I am seeing little signs of related symptoms. The spider veins on my face. The Hypersensitivity Vasculitis (Leukocytoclastic Vasculitis): Multimedia - eMedicine spread over small parts of my body. The waiting is maddening in a way. You wonder, thinking all the time. I had an appointment with my nephrologist (local) back in Oct. and cancelled it. I don’t know why. I have some urology tests that need done before I go though. And just finally today I called and rescheduled that appointment. I will go to town tomorrow and have the urine tests done. They are looking for proteinuria and any other sign that my kidneys have started to purge protein. I will keep an eye on my blood pressure. My legs and hands have been swelling with fluid occasionally, but never when I go to the Dr. So I am taking pictures of it so that he knows what I have been going through. I have been trying to find a support group related to FGN but have had no real luck. I would actually like to find a local research facility. With my case being “unusual” I would like to really know what is going on. I don’t want to be blown away one day with the possibility of living on dialysis for years. I’m too young for that.
I would love to have some feedback from anyone who is suffering from this disease, or knows someone who has. I would like to be prepared for kidney dialysis when the time comes. My girls and I are going to take a trip this summer, after we get a bunch of work done on our house. I want to have something wonderfully memorable to think about once I’m down. And I know I will be down for awhile at some point. It is going to be strange to have to deal with high blood pressure after having had a low B.P. for so many years. This hub is a little personal I know, but I felt the need to put out there what I have been able to find and hope someone who is educated with such things to offer further information and support.
Thanks~ Anita **************************************************************************************************
TI Fibrillary glomerulonephritis: an entity with unusual immunofluorescence features. AU Alpers CE; Rennke HG; Hopper J Jr; Biava CG SO Kidney Int 1987 Mar;31(3):781-9. We describe seven patients with renal biopsy findings of mild glomerular abnormalities on light microscopy but with prominent accumulation of randomly-arranged fibrillar material in the mesangium and capillary walls on electron microscopy. This material differed from amyloid in that fibrils were thicker (diameter range 10 to 19.5 nm) and did not stain with Congo Red. In six of seven cases fluorescence microscopy showed prominent staining for IgG and kappa light chain in mesangium and glomerular capillary walls; in three cases weak lambda chain staining was also present. Stains for IgA, IgM, and lambda chain were otherwise negative. One biopsy showed equal staining for kappa and lambda light chains, but not for heavy chain components. Clinical findings were heterogeneous. Patients presented with features of nephritis and/or nephrotic syndrome. No patient had an associated lymphoplasmacytic disorder, paraproteinemia, or other evidence of systemic disease. On follow-up ranging from five months to 12 years, all patients are still alive; six progressed to end-stage renal disease requiring dialysis. One patient developed recurrent disease in a renal allograft five years after transplantation. Non-amyloidotic fibrillary glomerulonephritis is an ultrastructurally distinct entity of undetermined etiology. The apparent association with monoclonal IgG and kappa light chain deposition observed in this series deserves further study. PMID 3106698
Vitamin D Deficiency Items Found
Vitamin D requirements increase with age, while the ability of skin to convert 7-dehydrocholesterol to pre-vitamin D3 decreases. In addition the ability of the kidneys to convert calcidiol to its active form also decreases with age, prompting the need for increased vitamin D supplementation in elderly individuals.
Hypovitaminosis D is a deficiency of Vitamin D. It can result from: inadequate intake coupled with inadequate sunlight exposure (in particular sunlight with adequate ultra violet B rays), disorders that limit its absorption, conditions that impair conversion of vitamin D into active metabolites, such as liver or kidney disorders, or, rarely, by a number of hereditary disorders. Deficiency results in impaired bone mineralization, and leads to bone softening diseases, rickets in children and osteomalacia in adults, and contributes to osteoporosis.
So possibly, this deficiency comes from our kidney's ability to process the vitamin D. I don't think this may be a cause of our FGN, but certainly an effect!
Just one more thing for us to try to stay on top of.
I'll add more as I find it folks.
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Thank you einron. I believe much in His healing power. It's already keeping things at bay.
you are n
What does that mean? "you are n" Anyone?
I am happy to say that out of this article I am at least able to help one person. All of the research that I have done trying to figure out what is about to happen to me, and posting what I found, has touched at least one life. And that is what I am here for.
Bless you all.
Anita, I just read your story and I wanted to share with you that my Mother went into the hospital a week ago and also recently was diagnosed with this same disease. As you can imagine this has been very difficult on her as well as our family. If you would like to email me personally I would be glad to talk with you about it. My email address is jwnjwn01@aol.com. I hope to hear from you & god bless.
Jarrett
My dad has recently been diagnosed with this disease and we too are trying to find out more about it. We are looking for someone who specializes in this disease but haven't found anyone so far. If you could email me I would appreciate it as it is comforting to speak to someone going through the same thing. Thanks. jamielwynn@windstream.net I hope to hear from you and pray God bless you.
I was diagnosed with FGN in 2002. I have had increased health issues but so far, I do not yet need dialysis. This is a difficult disease to find information on - when I was first diagnosed I could only find 2 test case references. My specialist is in a large group in my city and no one there, with all their experience, has ever encountered a patient with FGN.
I am very aggrivated lately by the fact that no one can tell me why I have this. I see a specialist every 3 mo. to have my protein levels checked, and my PCP keeps an eye on my blood pressure. I was told that I have evidently had this for at least 4 years, and from what I have read, usually 4 years into this a person begins to have problems in different areas of their health. Ok, my blood pressure is great, and I have not shown any protein w/urine checks, but my sugar levels have begun to rise, I have a constant pain in my right side rib area, and just plain feel like crap all the time. But, nothing is being done. Just plain confused.
csue99- I am so glad to hear that you are doing well with this too. At least, as well as I am so far too. It gives me hope to find someone else in my boat with me. I worry that by the time I may need a kidney, there won't be anyone there for me. Dialysis is very tough from what I hear. Support is great to find. Hope all is still well and continues to be.
I first have to thank you so much for posting this information, this is the most information I have been able to find on this disease that I can understand. My husband was diagnosed with this disease 12 years ago. We were able to stretch out the length before dialysis and transplant for 7 years. Every time the doctors told us a level was too high we would adjust his diet to level out the increase. The specialist have told us this is what gave us more time. However we also have not been able to find many answers. My husband had a transplant 5 years ago, he was blessed to have a brother donate the kidney. We just found out the disease is once again appearing. The doctors are saying it will be very progressive. Blood pressure is a big part of it, high blood pressure will lead to progressive kidney disease and kidney disease leads to high blood pressure, so it is a constant balancing act. Thank you.
dmc- I am so happy that I could help. I'm still very confused myself. I have never in my life had blood pressure problems, but just last week, after a regular appointment with my PCP, I got a perscription in the mail from the office. I was very surprised when I called to ask what it was for to find out that my blood pressure was up for the first time. So now I think I will have my protein level checked too. Did anyone tell you that you would have problems with the disease coming back so soon? That is what I am worried about. I have one brother out of 6 siblings, who is willing to donate a kidney should he be a match. I'm sure I could learn as much from you as you could from me. So, THANK YOU TOO!
The doctors did tell us that between 5 - 7 yrs the disease could attack the kidney. The transplant does not get rid of the disease. My husband has had alot of health issues since the onset. High blood pressure, high cholesterol, diabetes, just to mention a few. We have met alot of kidney transplant patients who have been able to be adjust to very low doses of the anti rejection medication, however my husband (Kit) had not been so lucky. Because of the long term predisone and anti rejection medication he is also have difficulty in other areas. He is disabled and unable to work. Because of the medication he sleeps alot. I do not want to scare anybody the doctors tell us each patient is different. My best advise is to listen to your body, it will tell you when your levels are off. The way we knew the disease was back was because my husband can not even tolerate the smell of meat cooking let alone the taste. His taste buds are the clue that his levels are out of the norm. When you feel tired rest. Any questions please reach out to me at dawnkit2000@yahoo.com.
Hi Anita, I too have Fibrillary GN and was diagnosed just over 2 years ago. It was found while I was pregnant as they initially mistook it for pre-eclampsia and tried to induce my son early. I don't deal with it very well and the lack of info doesn't help so it was really good (in the nicest sense this could be) to read your post and realise I wasn't as alone as the Dr's made out. Rare doesn't have to mean isolated. I'm really keen to talk to others who suffer from this and admire you for putting your story out there for somewhere for us all to go.
When I go to the hospital I feel like a walking kidney and that half the time the good Dr's forget there's an actual person surrounding it! They are doing all they can for me so I shouldn't be mean but I can't help be angry about it especially as there's nothing to indicate how or why I have this. I am 34 years old, I have a 2 year old son, I have been told any more pregnancies could cause early renal failure and the chances are I could be on permanent dialysis before my son is 10 years old.
It's him and my hubby I worry for but half the time it just comes out that I'm mad at them when I'm actually mad at my myself for having faulty bits.
Anyway, apologies, I didn't come on here to rant and I really would like to be in touch with anyone suffering from this - I promise my emails won't solely be about creat. levels and albumin scores!!
If anyone wants to compare war stories, please feel free to rant back at me on: louisebch34@yahoo.co.uk.
Take care everyone and good luck for the future.
Lou x
Big question for all of you: Have you been exposed to pesticides frequently?
The reason I ask, is because I had read somewhere that common household pesticides have a really bad effect on a human's kidneys. I wish I could find that article. My girls have always been really bad about dragging in stray animals to nurse and find homes for, and I think I own stock in the "flea spray" industry. I also grew up on a farm and have done my own farming and gardening for at least 35-38 years now. Putting aside the home flea treatments, I've handled stuff such as "Seven Dust" for most of those years. It's a far reach, but I think I am going to discuss this with the specialist next time I'm in. Which is in about 1 1/2 mo.Another thing, I don't know what my PCP's problem is. He insists that I don't have the disease at all because I'm not "showing any signs or symptoms", BIG DUHH !!! First of all, the hematuria is one sign, and the fact that I have always had a BP of 110/60 or lower, but was just put on a low dose of BP medication because I guess it has gone "over the top" just a little, is another sypmtom. Maybe he needs to be educated a little more on the disease. Once my BP raised, I should have been checked for proteinuria right away.
So I'm right there with you on being aggrivated and confused, and hurt.Lou: have you even begun asking any family members or friends if they would be interested in being tissue tested for a match? I would get on that right away. And don't think that they wouldn't be interested. You would be surprised.I have a brother who volunteered, but he has yet to be tested. There is a total of 6 other siblings in my family. I will also go online to all of my facebook friends, and possibly my hub friends, to find a personal donor. Don't let the thought of "permanent dialysis" fill you with dread. I did for a little while, and sometimes I wonder if such things are the true cause of my BP rising. ???I haven't been given the results of my latest run of blood tests. So I don't get stressed, as "no news is good news", or is it?I am so happy that my own venting on here has drawn us all together. You all are actually educating me on some of this too. I'll be happy to share my email address so that maybe we can form a group for one another on this. I pray that no one uses it in a malicious way.anitariley65@yahoo.comAnyone with any ideas or concerns, feel free to contact me, as I may have questions myself for some of you.Thanks again Lou.
Anita
Hi Anita,
I was just browsing to try and find out more info on FGN and came across your story.I too was diagnosed with this back in 04(I believe),via kidney bioposy,.My nephrologist told me it is a very rare "disease" and usually within 10 yrs,most are on dialysis from it.This scares me because my symptoms started when I was pregnant(99) and they just thought it was preelampsia.My blood pressure never returned to normal and I had to be put on blod pressure medicine.So,if thats the case,its been 10 yrs now.I have high levels of protein and traces of blood in my urine at any given test and my ankles and feet have now begun to swell on a daily basis and sometimes I have to take a pretty strong diuretic because I swell everywhere else....face,hands,abdomen,ect......I'm now feeling tired and worn out quickly and loss of energy.I just had blood work and uranalysis done and see my dr in a few days because of my new symptoms and concerns.Your story is the first I have read of anything on it.It I can't find anything about it.If I do,its in medical terminology and very hard to translate.Any corespondence would be great.My e-mail addy is gert_200476@yahoo.com.Tks in advance.
Hi There, Me again.
First of all, I hope everyone on here is well and coping ok.
Secondly I was just wondering if anyone here new if this condition was in anyway hereditory? My Grandma on my Dad's side died when I was 10 and I can't for the life of me remember if it was kidney or liver disease. As with most disfunctional families these days, I'm not in contact with my parents so can't ask them but I do know that my dad has suffered from high bp for many many years and this is obviously a symptom (ok, so it's a symptom for most medical concerns but taking into account my Grandma ......).
So, does anyone know if this or nephritis in general can be passed down through families??
Any help would be gratefully appreciated.
Lou xx
Hey Betty- from what I have learned from my specialist at OSU, they will continue to just treat your symptoms until they no longer can. Which sucks, being on BP medicine, diuretics, etc. continuously until your body can't take it any more. Then you go onto dialysis, and eventually a transplant. I've talked to a few ppl who had their transplant, and 10 yrs. later are needing to have another. I hate to think that I will have to have one in a few years and only be 47 or 48. Makes me wonder how many I will need to live the amt. of years I want to. :(
Lou- I haven't seen any evidence or studies to support hereditary issues. I see a genetic specialist at OSU for my familial and juvenile polyp issue. She has been testing me to find a marker so she can test my girls (to no avail yet). I have asked her about this and she says NO. It's a fluke disease. I wish I could tell you more. I will see my neph. next mo. again, at which time I'm sure he will find protein now with my BP rising, and I will ask him about it.
Thanks Anita, I am being told the same but they are also telling me they don't know much about this particular disease so it's very contradictory. Good luck with your next appointment, mine isn't for another 2 weeks although I'm giving blood samples at the GP surgery every week due to a medication change. Since starting these new drugs my knees and ankles have come up like tree trunks, am hoping that is a temporary side effect, it's about as warm as it's gonna get over here in england and I can't even wear a cool skirt as my ankles now hang over my sandals!!! Why can't these side effects affect places that the public were never meant to see!! ;-)
Anyway, please pop a post on here to let us all know how you get on and I'll keep you posted on my elephant feet!!
Take care
Lou xx
I was diagnosed with this disease by way of biopsy after I had a routine physical, which revealed blood in the urine. This was in 2004. I have been going to a nephrologist every 3 months since. Apparently, it is still status quo. My creatinine is 1.8, which is classified as Stage 3 renal disease, but that is what it has been since the diagnosis. I am due in the nephrologist's office on 08/04.
Dear Mary and Lou-
Hope you both stay in touch with us and let us know how things are going. They never tell me what any of my levels are, maybe I should ask more questions. I know that things are changing though and that it's time to keep a closer eye on things. I hate the long drive to my specialist and tend to procrastinate. But I have been gaining weight (lots of fluid too) and feeling so different that I'm going to have to learn to just do the drive and take better care of myself. My page here isn't as full of info as I would like it to be, but I'm just kind of adding as I learn more, going by my own experiences. Hope to be a help to someone, but I also am glad for the support from others facing the same thing. Good luck to you all. Stay in touch please. And by the way- did any of you experience a lot of pain for several weeks after your biopsy?
Anita
So a few of you have upcoming appointments, soon. I hope you will be in touch with me still so I know how you all are doing. I will call Monday a.m. and make my next appointment. My PCP had to raise my b.p. med. Metoprolol a couple of days ago because it still hasn't brought my b.p. down, or- my b.p. is just starting to run out of control. It's still not as high as some, but having had a 110/60 nearly all of my life, despite my weight, he is concerned to see it rise as it is.
I don't want ANYONE to think that it isn't ok to come here and vent. That is what I am here for. I am rather poor and disabled, but not drawing disability as of yet, and have been feeling worthless for the past year and a half. I just decided one day to get my story out here and bond with ppl who may be going through the same things.
I feel blessed to have met you all.
Thank You- Anita
I can't believe I found this site - I too was diagnosed with FGN last year, after years (at least 5) of hematuria, and finally last year protein showed up when I had a UA done. Had a biopsy on the 24th of July and wound up at the Mayo Clinic to have everything confirmed. So far my labs have been "okay", & I still have 80% of my kidney function. What other symptoms have you all been experiencing? I don't have extremity swelling but I'm always tired. Not sure if it's the BP medication, since I have low blood pressure thanks to my dad. Another question I have is has anyone been put on a special diet? Please feel free to email me at bjmason@twinvalley.net. I don't feel so isolated now that I've found this blog. Thanks to everyone who has shared and posted.
Hey Jeri,
Glad you found us too. You sound like you are at the same point I am. I've always had a normal-low blood pressure too until about a mo. ago. I was put on BP med. too and yes, I'm tired all the time too. I see Dr. Rovin at OSU in another week, and I'm sure he will be finding protein this time around, mainly because of the way I have been feeling. I've been told that I will have to go on a low-0% protein diet towards end stage renal. MY PCP just ordered a run of several different blood tests, which I have not gotten the results from yet. He is looking for the Epstein Barr Syndrome and Lupus. Have you been diagnosed with any of the diseases which cause FGN? Or are you like me and have the Dr.'s stumped as to why I have this condition? LOL Stay in touch with us. It may be "years" before any of us go downhill, but I want us to be here for each other when they do.
~With warmest regards- Anita
Anita - Thanks for answering back so soon!! I have stumped everyone by not having anything that might be the "cause" of FGN. The nephrologist I saw at the Mayo Clinic said if my protein goes up and stays up I will have to go back up for a bone marrow biopsy, because sometimes they have seen a person have what he called a "smoldering myeloma", which was the underlying cause of their FGN. Find out what your protein level is and what your kidney function # is. My protein varies anywhere from 700 to 2200, seems to go up and down, and I have moderate blood in my UA. I'm just tired of being tired :)
My doctor at the Mayo Clinic said he has a patient that has been stable for 10 years! I'm hoping to be one of those. I will keep checking back for updates on everyone! God Bless - Jeri
Jeri- I am in the process of being tested for Chronic Fatigue Syndrome. I have been diagnosed with Fibromyalgia, but there is something more going on. I'm exhausted 99% of the time, physically, but not mentally.I am not anemic, but I do know that I always have a high white blood cell count. Who knows. I will ask the nephrologist about my counts and all. And I most definately will remember the "smoldering myeloma". That sounds scarey. I pray that's not an option/diagnosis for you. Keep in touch. Will be thinking of you.
Anita
Anita,
Did you make it back to the doctor? Did they find protein yet? I wanted to ask you if they had checked your cholesterol. Mine was high due to the FGN, but more medication and it's coming down. My doctor has my labs now for every two months, and I see him every six months, unless the labs indicate otherwise. Just was checking to see how you were.
My PCP wouldn't check for protein, he said "thats the job of your nephrologist". But he did check for Epstein Barr, and Lupus, and both came back negative. I see Dr. Rovin Next mo. That was the soonest they could get me in to see him. I have to go in again to be checked for ulcers. I am having a hard time with that. Seems like I live on Zantac and Rolaids. Do any of you have that problem? My cholesterol is fine too. He has been keeping an eye on that since he had to put me on blood pressure medicine. I'll let you know what I find out at OSU. All this crap is causing my anxiety to rise constantly. Take care.
Anita: I am so glad i was able to find this website. My cousin was diagonised yesterday with this. We are a close knit family and are here to help in any way possible. I gave her and her husband this website to be able to ask questions and get help. I would like to try to raise money for this cause. Can we possibly try to do this on a national level as well as a city level? I was thinking of a having a national FGN day, maybe we can all get together on the same day and try to raise money on our own level? Have you had any success in this. Maybe we can take this to another level and also try to raise money for research in this disease. I was thinking if we did this at a local level to donate the money to the family to offset unpaid medical bills. Than, we can take this to another level to try and raise money for research, what do you think?
Dear Susan~ This all sounds like a great idea to me. I just don't know how to even begin. I am thankful that you felt prompted to forward this site to someone you care about. I just started out trying to understand things myself. But I have found some great support and reassurance in it. I guess I could begin with trying to get contacts from my local specialists office. Just put the site out there and see if I get any responses. I haven't gotten any responses on here from anyone local yet. I kind of hoped that I would. So maybe I'll just try a little harder. I live on $38 a week right now and never know from mo. to mo. if I'm even going to have internet, lol, so I just never committed to anything like this. Maybe we could do someone some good somewhere. Keep in touch with me and email me with any ideas if you like.
Anita
I was recently diagnosed with FGN. I'm exploring different med's the doctor has recommended to try. Any treatment/med's that you have heard of that are recommended over another. Any information you can provide will be helpful. I have little knowledge of the disease. I'm looking for a doctor/center that specializes in FGN.
Alicia, myself and others, hopefully, will post anything new we come across. It depends on where you live as to whether you find a FGN specialist. I'm lucky to have OSU near me. You can look up local Nephrologists then start making some calls. If the ones you talk to cannot help you, they may be able to lead you to someone who can. Good luck and stay in touch.
Anita
Alicia,
As far as I know, there is no known treatment for FGN. I am on high blood pressure medication, even though I have low blood pressure, to keep my pressure just this side of "passing out", as your blood pressure really can have an adverse effect on your kidneys. FGN will cause high blood pressure which then in turn causes high cholesterol, which I am also on medication for. I was diagnosed in Kansas and was referred to the Mayo Clinic, where the diagnosis was confirmed. All they could tell me was to eat a heart healthy diet, and if my protein levels got too high, they would do a bone marrow biopsy to see if I had an underlying "smoldering myeloma". They also tested me for every auto immune disease known to man, I think. Which I have none of, thank goodness. FGN is enough!! There may be some clinical trials out there, but as yet, there is no known cure. I echo was Anita said, and get to a nephrologist. They specialize in the kidneys and what we have is so rare, even my nephrologist didn't know much about it. He has since educated himself quite a bit, which makes me feel much more secure in his care. My primary doctor doesn't have a clue. One more thing, whatever medications, if any, you are on, run then by your nephrologist. I have to do this with anything my primary doctor prescribes to make sure it's kidney friendly. Hang in there, I was diagnosed about 18 months ago, and so far things are somewhat stable.
Isn't it funny how a "previous or current autoimmune disease" is the culprit, supposedly, of FGN? And yet none of us, or most of us, HAVE NOT? And yes, double check with your pharmacist about ALL meds. I was just perscribed Midrin for my migraines, and took one dose without checking the warning details. My legs and feet swelled within a few hours.
Thank you Jeri for your wisdom too. We are all here for support and learning what we can. I'm so glad I found out about Hub Pages.
Have a great week everyone.
Here is something to read.
I was diagnosed in NYC at Columbia Presbyterian Hospital. I go next week for a bone marrow biopsy. I currently take no medications. The nephrologist suggested cytoxan and prednisone along with blood pressure medication, even though my blood pressure is normal. I was told to eat a low salt and low protein diet. I see the nephrologist at the end of the week, but will make no decisions on any medications I may or may not take, till the bone marrow biopsy results are back.
Thank you Alicia for sharing your information. You will be in my thoughts and prayers too.
Alicia, Hang in there! As I said, my blood pressure was low-normal, but I am taking blood pressure medication as FGN and its lovely protein can cause high blood pressure, which is not what our kidneys need!! Do you know what your protein level & creatnine is? It's a huge learning curve, to know what the lab numbers are and what they mean for you, but try to educate yourself on what the numbers mean. Write things down as you think about questions and take to your doctor. Make he/she talk in layman's terms if you don't understand the medical jargon, until you understand what is being said. If you are anything like me, I was kind of in a zone when my doc told me about FGN.
News on my end of the deal here, I am now spewing protein, as my urine has turned a neon green color. My hands, calves and ankles are swollen all of a sudden. The tops of my feet feel like they could split in two also. Just got an emergency, or "stat" blood and urine order from my specialist, and will see him next Wed. I am curious as to why or how it just happened all of a sudden. I know I went about a week without coffee or tea, which acts as a diuretic, and about 4 days into that is when I noticed the change. Now back on the caffeine products, the swelling has nearly disappeared, but the color of the urine remains. I hope to learn much more at my appointment and will post my findings ASAP. Hope you all have a great weekend.
Anita
Anita -hang in there. Please keep us posted as to what is going on - will keep you in my prayers.
Thanks Jeri girl. Will post again on Wed. evening when I get back from OSU.
Anita - what did you learn? Will be anxious to hear.
What a day it was yesterday, well, and the week and a half preceding it. As i stated earlier, I was curious as to why I was having these problems "all of a sudden". One of the first questions Dr. Rovin asked me was did I "go on a salt kick" in the days before the changes.
This question stumped me as I am "always" craving salt, and sometimes do over do it. But I hadn't been craving it at all lately. And, no one told me that I might either. I hate it that I was just given a diagnosis and never really had much explained to me.
Especially the part about red meat. I LOVE red meat, and often eat a steak medium rare. All of this is the great pile of information I am going to be doing a lot of research on in the near future. I've got to educate myself and all of you, because it doesn't look like anyone else is going to do it for us.
A few days before my appointment with the nephro. I had to see my PCP for something (viral sinus infection) and asked them to please do a protein/urine check for me. The protein came back positive, but they couldn't tell me exactly how much. And by the end of that day, the green color had nearly completely faded. And it stayed that way up until today, Thursday. Funny how it disappeared for the neph. then reappeared again just to bother/worry me.
The 24 hr. urine and blood work was done on me on Monday, and for some reason it hadn't gotten to Dr. Rovin by Wed. so he and I didn't have much to talk about after an hour and a half drive to see him.
So today, Thursday, I stopped in at the lab and had them make me a copy of the test results. I'm sitting here now trying to understand them and looking up as much info as I can. I just couldn't lay in bed after watching Grey's Anatomy and Private Practice do a bad kidney transplant.
Funny how these things happen. All I could do was cry and think. Better to be educated than to sit and think the worst. Am I right folks?
BLOOD WORK- Creatinine
RESULT- 0.90 with a normal range of 0.52-1.04
24 HR. URINE CHEMISTRY
Creat. Clearance- 116 Reading high with normal= 80-110
24 H UR SODIUM- 38.78 Reading low w/normal= 40.00-220.00
24H UR PROTEIN- 117.5 normal= 42.0-225.0
So my protein is in the normal range, my CC is high, but my sodium is low.
Any thoughts folks?
Posting more below.
Still waiting, nearly a week later, for a call from Dr. Rovin. No news is good news right?
Anita - your labs are better than mine - my Dr. said he doesn't "start losing sleep" unless my protein is at 300. and yours is 117.5. Just had mine done and it was almost 200. I think you're okay - your labs that are high are just barely high and the labs that are low are just barely low. Somehow we have to learn not to let this rule our lives. Just eat right and keep your appointments. I've kind of taken the approach that I have FGN, not a thing I can do about it, I'm grateful that it was found so early, and maybe, God Willing, there will be a cure found before it advances to the point where it really affects my life. Hang tough - Jeri
Thanks Jeri. I'm not too worried now about the labs. My concerns are more about what would happen to me 10-15 years from now after the first kidney transplant, when the new kidney gets attacked. I'm like you, prayers out in hopes of a cure, or even just more understanding about it all. I still want my career as a nurse, or in the health field somewhere, even at 44 years old. I don't want to spend my life after the kids have grown, in a hospital. LOL
I've been through worse I guess, and I am strong through God. Maybe I need to focus on what I CAN do, such as some awareness and fundraising. Just scared to start it on my own. I will pray for all of us here for strength and well being. I love my new support group, all of you.
There's nothing worse than feeling like you are alone in something.
Well, I am just going to put in a man's point of view.. ha ha ha!!
5yrs. ago I to was diagnosed with FGN. Just a routine blood test for a yrly. exam showed extra protein in my urine.
I was retested and retested and also did the 24hr. urine test as well.
Finally, I was referred to a nephrologist in Evansville, Indiana. He watched the urine/blood results for a yr. and then suggested a biopsy. Which found the FGN.
He put me on BP medicine. Lisinop/HCTZ 20-12.5 once daily and also chloesterol lowering medicine. Which I have taken 10 different types and have horrible side effects from each. But Zetia is somewhat tolerable. All my bloodwork is
coming back pretty normal last check. Creatine was .66 and protein was 85.6.
Dr. said that this is great and we will monitor.
Have to go back in Dec. for next exam and lab.
Have started getting more tired. But am 52 and just attribute that to not being 25 anymore.
Thanks for this website as I too, do not find much info.
Hey Tom, WELCOME. ANY point of view is welcome here. Glad that you found a good nephrologist, and that your levels are great. It takes some time before you really notice some of the side effects. I'm tired all of the time also, and I am only 44. LOL
Thanks for joing us, and keep us informed of how you are doing, and anything new you may learn.
Anita
Hey guys - I have told my doctor time and time again I am tired all the time. Even if I go to bed at 9, I could still sleep until noon. I'm kind of wondering if this is because of the FGN, based on the comments you guys have made. Maybe I'll discuss this with him in December when I go back.
hello all,i to have been told that i have fgn it,s only been a week so it has not hit me yet but i am only 46 and still have a 13 year old at hame i cant go yet i went to the doc because of i was holding so much water in my feet and legs that the water was leeking and a test showed that the protein in my urine was 3000 but i think it,s down now that i am on blood pressure meds but only time will tell i wonder if folks with fgn have ever talked and tryed to see if we had any thing in common that might tell how this gets started well take care for now it looks like i will be back here a lot
Hey Paul - welcome to our world!! One word of advice - keep taking your BP meds and have your doctor check your cholesterol level as well as FGN can affect that. Get yourself a good nephrologist too!! They don't have any idea at all what has caused my FGN. Have you read the other posts? Sometimes it can be caused by auto-immune diseases, such as Lupus, HIV, Hep C, etc... The Mayo Clinic said that if my protein continued to climb, (I'm at 2000 now), I would go back for a bone marrow biopsy to see if I had a "smoldering" myeloma, which is a rare cancer of the bone marrow. So far my labs have been okay, going on 18 months of having this. Hang in there, learn what your labs mean, and like I said before, get a really, really good nephrologist - and make him explain to you until you understand. Hang in there!!
Yes Paul~ WELCOME
Hi everyone. this website has been interesting. My husband also has fgn. His protein levels are high also and the creaton (sp?) levels are high. The doc has him on meds but the levels get good and then go bad. We do not know what to do. He is tired all the time and this is very irratating to him. The meds make him crabby and he tries very hard to control this. What are you suppose to do. We have asked if there is something that we can change as far as eating and there doesn't seem to be. The pesticides that were mentioned is interesting. Tim was in Viet Nam and we wonder if something was given to him or he was exposed to something. We brought this up to the doc and he was going to check into it. We don't see him again until December but have monthly blood tests. If anyone can give me ideas my email address is smullen923@gmail.com. Would love to hear any imput. Good luck to all and i will be on this site also. Thank you
Welcome Sue! I would definately check on the V.N. thing with your doctor. My dad was over there right before I was made, lol. And I am one out of 7 kids with many, many, health problems. I often wonder too. But no one would confirm that for us because it is the govt. Stay in touch with us. We will keep you up to date as soon as we learn anything new too.
Thanks~ Anita
Thanks Anita You know this disease is so wierd that they cannot tell us much about it. It is like if you have cancer they can help you if caught early and you can understand it.I would truly like to know isn't there something that we do to really help like foods or medicines. I don't know what you all are on but my husband is on Furosemide, Bactrim, Prednisone and Mycophenolat. I know one is a blood pressure med, one is like the med that you would take if you had a transplant to help accept it but it also breaks down the immune system. I just wonder what all these drugs do to your body. Is anyone else on all these meds. I am sorry, but I don't have a lot of faith in doctors (no offense if anyone is a doctor) my brother is a doctor. Has anyone gone thru diayalas or transplant? I know the govt. won't confirm what they even gave the people in the service, but I know my husband was given a lot of shots before he went to Nam. How can we find out, does anyone know?
Thanks for listening, I guess I am venting it is all so scary. Thanks Sue
Dear Sue~ First of all, you're not alone.
I'm not sure how we can find out about such things, but I will do some research in the next few days and see what I can find out. Have you done any research on these medicines? If not, I will check them out.
I personally have not had to go through dialysis yet or a transplant. But if anyone here has, they will let you know what to expect. Don't worry about venting, as you can see in previous comments, we all do a little of that, me especially. That's one of the reasons I wrote this, LOL.
Hang in there sweetie.
Anita
hello every one i hope you all are doing well i would like to ask any one about bp meds my doc has me on 25mg of metoprolol and 40mg of lisinopril and my bp has only droped from the 180's to the 160's even after uping my dose of lisinopril from 20mg to 40mg does any one know of any that might be a little better i can ask for and also i have no idle how to cook stuff that is good for me or my kidneys does any one know of any web sites that might help
Paul, hi I do know my husband was on metorolol for a year to decrease his heart rate and it made his heart rate so low he was tired all the time. His pulse was down in the 30's as soon as he was off he had alot more energy. The kidney doc also took him off of lisinopril not susre why, but i believe he thought it was affecting the kidneys. He change his meds but not sure that is helping at all. Best of luck Paul How to hear from you soon. If you need to know the other meds i will look them up for you.
Sue
Hey everyone. All good here for the time being.
PAUL- I am on 25 mg of Metoprolol, twice a day and it keeps my blood pressure down. I am very tired though too Sue.
Paul- here is a web site you can check out. And if I find more I'll post them. Busy weekend so sorry if I'm slow getting them on here.
Take care everyone.
Anita
Hi. I found this site trying to educate myself a little further on Fibrillary GN. I had my biopsy in 2003 and was told I had Fibrillary GN. I was also told that my kidneys could fail by 2005. On current testing, my blood pressure is now starting to get a tad out of control, but my blood tests indicate that my kidneys are still functioning ok. I am about to see a specialist (again) for the first time in 5 years, as I could see no point in the cycle of blood testing if there was no cure. In reading the blogs, my background to Fibrillary GN is somewhat different, as this started with a bout of shingles in 2002. before that, I was fine. I am a 54 year old Australian male and have decided to take up the fight again this horrible condition again. If it helps, I moved to the tropics to work for two years, an incredibly hot and humid place. I now believe that the sweat and humidity may have assited in slowing this down over that period, as the BP has only started to rise since my return and I felt fit and well working there. Could be a coincidence, but I think all thoughts are on the table with this.
Hello Still There.
Thank you so much for your input. The climate change may be something for some of us to look into and see if we experience any changes. Your encouragement you have given us through your own will to fight, is of great help to many of us I'm sure.
Thanks so much and well wishes your way for a courageous battle.
Sincerely- The FGN groupies.
Hye guys, was just wondering if any of you experience severe cramping in any parts of your body. I have been battling this problem for a year or so. I know that I have read somewhere that a chemical or something that our kidneys put out when we have FGN, wears away at our muscles. I will do more research on this and post my findings.
Hugs~Anita
Anita, yes my husband has had some severe cramping of his one hand ever since he was put on one of his meds. It has become less often but for a while it was cramping up alot. Has anyone out there had a second opinion? I have really been thinking of that.
Thanks Sue. I have had a second opinion by way of an additional specialist looking at the tissue biopsied, without a second biopsy. It will soon be time for a second kidney biopsy however, and I am not looking forward to that pain again. But I guess it is necessary.
~Just wanted to let you all know I produced a "Part II" for us all. It is confusing to the outside world, but for those of us researching this disease, it is understandable, I hope.
Thanks to you all for the support.
Hugs~Anita
Hi Anita
Hope you don't mind me jumping in again. I get cramps in my left calf. This last one happened 5 days ago and I am just starting to walk freely again now, being Sunday night. My cramps started three years ago. An immunologist suggested sea salt. I know it's not our friend, but it does stop the cramps. I am becoming somewhat concerned at my BP. I have always had 120 over 80 until the last year. My average now is 175 over 110. I have my appointment on the 25th nov with my new nephrologist. Do you mind if I join this group as I don't know where else to go.
Hi Anita
Hope you don't mind me jumping in again. I get cramps in my left calf. This last one happened 5 days ago and I am just starting to walk freely again now, being Sunday night. My cramps started three years ago. An immunologist suggested sea salt. I know it's not our friend, but it does stop the cramps. I am becoming somewhat concerned at my BP. I have always had 120 over 80 until the last year. My average now is 175 over 110. I have my appointment on the 25th nov with my new nephrologist. Do you mind if I join this group as I don't know where else to go.
Hey there "Still Here". You and anyone else who wishes to stay with us here are welcome. Maybe we should start a group on yahoo groups?? It would take a few of us to keep it going though. Anyone interested? Let me know. Hope everyone has had a great weekend.
Hi Folks, it's me Tom.... It's been a while since last posting, but getting ready for Thanksgiving and the thing
I deal with my FGN is the chloesterol. I have tried 10 different medicines and with horrible side effects.
I am on Zetia and it's not too bad but some stomach or right side under rib area discomfort. I know when I go for my physical in Dec. my internal medicine dr. is going to give me one of his stern looks and lecture, but I just can't take the Lipitor, Zorcor, Crestor and so on and on and on stuff. Anybody else have this issue??
And as far as being tired... Me too! Thanks for letting me
vent.
Nice to hear from you Tom. And before I forget,
HAPPY THANKSGIVING TO EVERYONE.
May all our lives be lifted and may we give thanks for the fact that we all could be a whole lot worse off right now.
I haven't had to deal with any kind of cholesterol medicine so far. Thank God. But I'm sure someone will have some advice for you.
My two doses of Metoprolol are becoming ineffective now. Will probably have to increase dosage or add another BP med. now. I know that my migraines are also increasing in #'s and intensity too. I also found out yesterday that I have a swollen lymph node in my jaw (right in the joint) on the right side that nearly dislocated the jaw by the time they figured it out. On antibiotics for that right now.
Do any of you have weak immune systems? If I've already asked that, sorry, I"m sitting in Labor and Delivery with my daughter who is only 35 weeks pregnant, and only 17 1/2 years old, and scared right now. She is due Dec. 29th, but this little boy has been trying to arrive early for nearly a mo. now. Will try to stop in and chat with everyone soon. Take care, and I hope we can all continue to support one another.
Anita
Okay - here's one for my fellow FGNers. Has anybody gotten hives? I've started doing that now. Especially around my waist where the waistband sits, and today I have a pair of clogs on and they are starting on the top of my feet. Anita, are you a grandma?
Hey Jeri, not a nanna yet, but getting closer. She has finally started to dialate, to 2. We have been in and out of the hospital with false labor about 5 times now. Soon.
No hives here. What I am dealing with now is the fact that I have started working again since being off work for almost 2 years now, and my ankles, feet, and calves have swollen severly. I cry all the way home from the pain. But it's seasonal and not hard on my back or neck, and I've got to do it. Maybe next year I will go into working in the call center rather than in shipping. I feel so different lately. I know I am headed down the dialysis path at a strong rate of speed. But I'm trying very hard to avoid it.
My sweet mother has me so confused now. When we discuss my Fib Gn she tells me, "you may never have to go through dialysis or a transplan". But she is wrong, right? I mean, from what I have researched, it is inevitable, right? I am so confused right now. I guess I'll have a lot of questions for my specialist when I see him again.
When the baby gets here, there will be a page on it all I'm sure. Thanks for asking Jeri, and thank you all for participating in this page.
Hey there "Still Here". You are more than welcome to our group. The more, the smarter or more informed we are of our disease. I am just now getting into the sea salt craze. Been cooking with it instead of iodized salt. So far, so good. I hope and pray you can get a hold on the BP thing. Mine is slowly rising again, so it looks like my dosage may increase, or there will be a second med added.
I am unsure that this website is still being usedbut I wanted to let people know what is now happening in our life. My husband as I said befor was diagnosed with Fib
GN in July of this year. The doctor tried a drug that they hoped would help him but in the end did not. I only made him feel tired, crabby, and all over just terrible most of the time. He went to the hospital the other day and found out that he has a couple of blood clots in his lungs that they now feel came from the kidney. His creatin level is 4.5. The medicine they had hoped would keep him off dialasys didn't work. In the next couple of days he is having a procedure done for CAPD which is Continuous Ambulatory Peritoneal Dialysis. Right now it is all pretty scary. I am only hoping that this will make him feel better. This type of dialysis is done in your home so you are not going to the hospital. You do it at your convience about 4 times a day every day. It is a way to be able to continue on with your life in a more normal way. You can travel, play sports, go out with friends whatever you would do normally. I am just now in the process of reading deeply about it. We were not expecting all this so soon. You can look it up under CAPD and check it out. If I know people are still reading this website I will keep you posted and let you know how things are. If any of you have experience with this please send your comment I would be very interested. Hope you all have a Merry Christmas and a better Happy New Year.
Sue
Sue - I am so sorry to hear about your husband. How long has it been since he was diagnosed with FGN? I hope things go well with the CAPD. It will be a learning curve for both of you. Hang in there! So far, my labs are all good, but only time will tell for how long.
Jeri, He found out in July what it was. I don't know why something was not questioned earlier. His creatin level was at 2 and progressivly got worse. When he went into the hospital it was 4.75. He had the surgery on Mon and we were hoping he would be home today but now it hopefully be on Fri. Glad to hear things are good for you, Hang in there. I think that this CAPD is really going to be a big help in him feeling better. I was wondering if anyone was still out there, but people are probably busy for Christmas. I will keep you posted on how this progresses, I know it isn't as bad as I orginally thought. Best of luck to all and have a Merry Christmas and Happier New Year.
Sue, I'm so glad it's not as bad as what you thought it was. I go for my labs today and see my nephrologist next Wednesday. For me, it's always apprehensive to get my labs. I always wonder if my protein has gone up, etc... You guys hang in there. And Merry Christmas to you as well. Hopefully the new year will bring more info to all of us regarding FGN.
Hi folks!! It has been awhile since last posted. But I was just waiting for my latest nephrologist appt. and after reading some of the last posting by Sue, I'm almost embarrassed to post my latest lab results.
Creatinine level is 0.7 and protein total is 6.6. Protein UA is negative at 30. BP is normal and weight is stable but could lose 20 pounds for sure. Some fatigue but as I said, I'm not 25 anymore!! Nephrologist says since he has seen me in the last 5yrs. and my biopsy 3yrs. ago, my labs are now normal. Will just keep checking every 6 months visits. I'm a happy guy, but still have this dark cloud over my head. Merry Christmas to all and a Safe and Happy New Year too!!!!
Well I guess no one is using this site anymore. It is too bad because I feel it was a help. Anyone reading hope you have a wonderful New Year.
I am still using it - just hadn't seen anyone else on. Anita, what happened to you? Is everything okay? Sue, don't quit coming to this site. How is you husband doing? And how are you coping with everything that's going on? Please stay in touch. This is the only place that I've found where us FGNers can communicate.
Jeri I am so glad to see you on this site. I have no idea about Anita last was she was having a grandchild. I wondered if everything is okay. My husband came home on the 17th of December. It was a rough couple of weeks. He didn't want to eat and felt horrible all the time. He spent most of his time sleeping and in the bedroom. He started diaylasis on Jan 4 and he has gotten better everyday. He is eating well and enjoying it now he can taste the food. We started doing it at home on the 9th and this is so much better than the treatment that you have to go to the hospital for. It takes about 2 hours of your day and you can travel or do whatever you want to do. If you were going away they will have your supplies delivered to wherever you are going. I hope you never get to this point Jeri, but it really isn't so bad. I think the worst was the not knowing what it would be like and you get so scared. Things were not good at this time we had another bad blow, my father passed away on the 18th of December, so all of this was even harder. I will stay on this site if you will be here. I know I am not the one having to phsyically going thru this, but mentally I am. We are lucky to have a wonderful support system with our kids helping with anything they can. so you keep your chin up and I will stay in touch.
sue
Sue, I am sooo sorry to hear about your dad. That's a tough one on top of what you and your husband are going through now. My mantra is "It's not that God doesn't give you more than you can handle - He's there to help you handle what you get." Just saying that has helped me on more than one occasion. I'm glad to hear that things are not as bad as your feared. I think it's just the unknown, and once you know you can deal with it. If you decide to stop coming to this site, please keep in touch with me at my email bjmason@twinvalley.net
I was diagnosed with FGN in 2006. Right now my kidney functions are great! I'm on Cellcept, something for bp and cholesterol.
This disease has frustrated me because I was otherwise healthy until diagnosed. Now I feel like it's a waiting game!
I'd love to be in contact with others with this disease!
trishyo@gmail.com
Thanks!
Trish
Hi
Just something my son found for me that may be helpful. He has introduced me to a fruit from Thailand called Star Fruit. One of the benifits of eating this is that it can reduce BP. I've only been eating it for a week, one a day and two nights ago I recorded 126 over 77. I haven't seen that for two years. He may have also located one that reduces the bodies ability to produce protein !! Will let you know how it goes. Early days with this yet.
A HUGE appology to all of you here. It has been a rough winter at our house. I did get a beautiful grandson on Dec. 14th. He came 2 weeks early and had some breathing problems, but otherwise healthy. I'll post a page on his birth soon. I have been without a phone or internet since the second week of Dec. It has been rough. Just got back on line a few days ago. Got a lot of catching up to do. I'm really glad you all hung in here for each other. That shows me we have a strong group.
I had been waiting for 2 years to receive some Workers Compensation benefits and am finally being compensated, so I am hoping to be able to stay online.
FGN news on my end, blood pressure is still rising, and so my meds have been raised. Protein is back, won't know until April how bad it all is. Will see Dr. Rovin at OSU then. I had been taking Lyrica for fibromyalgia and have gained almost 60 lbs, so I am slowly taking myself off of it and hoping not only to lose the weight, but am anxious to see if my protein levels and such come down.
I did just send Jeri and Trish an email to say hello and I hope we can all get back into the game here.
Still Here: I love the Star fruit and think I will try to get it more often now that you have told us about it's benefits. Keep us up to date with the other fruit too. We could all use a little help.
Again, I am so glad to see you all here still. And I am looking forward to hearing some good news.
Tom: congradulations, hope all is still well.
Sue: I am so sorry about your loss. I hope things are getting better for your husband with this new treatment.
Hang in there everyone.
Anita
Hi. It's another late night looking for answers. I stumbled upon this and i feel like i walked into a world where i'm not alone anymore. I can't bring my dad back, but i'm trying to find out everything i can about what exactaly happened to him. I have read all the comments and it's so empowering to stop being scared and start learning. If i hear nothing in reply, i still walk away with knowing that you all have eachother and as much as i push technology away sometimes, it brought you all together and is comforting to everyone who reads it. thank you.
Robin, Sorry about your dad, did he have FGN? Keep coming back to the site it does help to talk about it and learn from others. It is all overpowering and a mystery since it seems to be a rare disease. I can understand being scared I have been there also. Keep in touch and I think it will help you greatly.
Sue
Thanks Sue! Yes, my Dad did have FGN. I feel awkward about sharing with everyone since his story did not have the ending we all hoped for. That's why i'm here. Only 1 year ago my sisters and mom found no source of information and had never heard of any of this. That's why I'm so happy for all of you to have eachother. I'm confused about why a disease that only effects "1%" of kidney patients has so many people writing about it! When my pediatrician asks me how to update my children's file, I don't know how to respond! I didn't even know how to pronounce it let alone explain it! It's embarassing. But i am learning alot.
Robin, for what it is worth our kidney doctor said it was not heritary. We were also concerned about this due to the fact we have 5 kids and 9 grandchildren. In fact one of our grandchildren gets infections occasionaly, but her pediatrician is aware of my husband's problem and also says it is not heritary. Was you dad on dialysis? How long did he have FGN?
Sue
Sue,
My dad had the routine urine test for his work where the blood showed up. His health was very good and he had just turned 60 that week. (Jan) After the tests kept comming back negative for bladder, prostate, etc. they deeply encouraged him to have biopsy of the kidneys after protein was now showing in urine. (April now)
He was diagnosed and was in shock that they wanted him to start dialysis asap and said it should have been 4 months prior! He refused and needed more info. Then by June his health was slowly but obviously changing. He refused the chemo like experimental drugs offered and was just taking Blood pressure and pottasium and some other things i'm not sure of. He had to stop working his very physical job and decided it was time to look at dialysis. He had 1 treatment and it did make him feel MUCH better. He was pleased to know he would be able to do it at home after some time and to know he could still travel with my mom overseas to visit our relatives. Awaiting the 2nd dialysis treatment he had conjestive heart failure. (August) He made decisions that suited his life style. He was only ill for a short time and refused to stay in the hospital awaiting the 2nd treatment. He left this world with his loved ones near him and in the farm house and wonderful life he created. No regrets...
Although now we are left ironing out what exactly happened and need to still know if we can help anyone else. It was a whirlwind of appointments and meds and traveling to specialists. It was 6 months of curiosity, 1 1/2 months of desperation. Thank you for letting me vent. Thank you also for the hereditary info.
Hi Robin, I'm so sorry to hear what happened to your father, it must have come as a huge shock to you. There are two possibilities that may have triggered FGN with me, but I can't prove it, just feel it. I noticed your dad had a farm house. Would you mind if I asked you a few questions? Did he ever suffer from allergies? i travelled by some feilds of conola that had flowered back in 1995, about 50 klms of it. I had never suffered from hay fever in my life until that day. Something in those fields triggered an allergic response in me and I suffer from hay fever, in a big way, every spring now. Could I also ask if your father had any viral infections in the years leading up to his diagnosis? I feel that what triggered FGN in me may have been a combination of the hay fever in 1995 and contacting shingles in 2002. It was after the bout of shingles that things went pear shaped for me.
I also have a question for both of you. I know Robin your dad was 60 and I don't know how old you are Still Here, but were either in the service. This is something that we questioned, but never receive an answer, but Tim was in Vietnam and who knows what he ran into there, plus all the shots that they gave before he went. Back then you didn't question you just took it.
Robin do you know the creatin level that your dad had? I don't quite understand how some people don't progress as fast with this disease as others do. My husband progressed fast as we just found out in July what was wrong. I know it also did damage to the heart which has now repaired itself with being on dialysis. Kidneys can affect so much of your body even your brain, it is a very scary thing.
You hang in there Robin and I hope you get your answers.
Keep on the site, I think it will help you.
Sue
Hi Sue
That was fast, I was just about to log out when i noticed your question. My name is Peter, I justed used the Still Here sign on as a bit of a joke to myself. i have just started exchanging info and ideas with Trish via email, which helps alot. I am 55 years young and try not to let FGN get to me.But i am also not affected as some with this. My email is peter.walters@fi-logic.com. If anyone wants to corresspond, I'm more than happy to do so. The more info we get, the better chance for all of us.
Hi Peter, I also have contacted Trish,but I didn't receive an answer for her. I hope all is going well with her. I do keep in touch with Jeri via email. I think the more people talk thru different stages is a hugh help. At least with some that are farther along can help thru the scary parts of this uncommon disease. My email is smullen923@gmail.com if anyone wants to chat.
Sue
Well Still Here and whoever else would benefit,
My father was raised on a farm overseas and continued farming his whole life. He did not however have allergies. He left that up to my mom! (she has horrible hay fever)
He was not ever in the service and did not receive a malaria shot at any time.
He did not have any viruses that were suggnificant.
He did enjoy spirits his whole adult life.. alot :)
Someone had mentioned pesticides and chemical contact. He was the king of weed spray and Seven. He had his pesticide lisence. God only knows what he was exposed to as a young farmer in the 50's and 60's
I am beginning to believe that pesticides may have a lot to do with this. My husband was also around them. When he was young and lived on a lake they sprayed the area from a plane to kill black flies and mosquitos. Plus the fact I am sure he came into contact with agent orange. Robin you say your dad enjoyed his spirts well we have had our times and questioned this. We were told this has nothing to do with anything you ate or drank.
Sue
Well, back from the Mayo Clinic and kidneys are stable. Protein is somewhat high, but not as much as they have been. My levels go up and down. I have to start watching my potassium as it is on the high side of normal, and the doctor explained to me that is due to my kidneys not being able to filter as well - well duh! Also am developing some rheumatoid arthritis in my fingers which he says can be caused by FGN. Otherwise, it was a fairly good visit. No detectable monoclonal cells, which he said would make me a good candidate for transplant, as long as I don't develop any. Hoping I don't ever get to that stage!! Hoping everyone is doing well!
To all of you here, most of my life I have been discouraged from sharing so much about my life. I have always been an open book. At the age of 13 I was found to be full of juvenile and familial polyps. It was a hereditary thing. But I came from a huge family. My mother had 10 other siblings, and I myself had 6 other siblings, yet no one else has ever been found to have the health problems that I did. My father was in Vietnam just before I was conceived. He and my mother had created my elder sister just before he left, and I was conceived immediately upon his return.
Relevant? I'm not sure.
I had lived with an Ileostomy (total) from the age of 17 (1981) until the age of 35 (2000), at which time I had a new surgery, a BCIR. Again, relevant, I'm not sure.
I was pretty sure that no one would ever read this hub page of mine and be interested. I just love to write, and it seemed the right thing to do to write about my experiences in life as a sort of healing process.
I never knew it would have this much of an impact.
I have been very busy lately with the new grand baby here at home, and I have gone through a major bout with depression while awaiting my worker's compensation hearnings. But I am back and slowly working my way back into my investigations of this disease. Especially when I have so much to live for these days.
Robin, I am so glad that you have joined us. And I am so thrilled that you are all becoming supportive on a personal level.
I will be asking Dr. Rovin for some educational information that I could share with all of you. If I point him to our group, I hope he will be willing to share what he can.
If not, then I will dig deeper for help. I'm not one to run away when one or two people say no. LOL
By the way- how many of you have changed your diet to a "very low in protein" or no protein at all?
I have not been able to bring myself to do this, as I become quite week without it, nearly incapacitated.
I have cut out quite a bit of salt, which seems to help with the swollen feet and ankles.
Any changes which any of you have made that seem to have helped, please feel free to share.
I'm going to do some research today and hopefully post it as an add on to this page. The second page I did for FGN was mostly medical info I found online, that you all have probably found on your own too. It's not very interesting.
I thought about starting an FGN facebook page? What do you think? Do any of you use facebook?
Let me know. It seems to be the rage, and we may be able to talk more frequently. But if it is too public for you, please let me know that too.
Have a beautiful afternoon folks. Stay strong. We are warriors!!
Anita
face book would be wonderful! it's easy to use and you can certainly speak privatly if desired. This has been such an interesting journey and i love that there are people out there like all of you that have a drive to know more and be more.
Just dropped in the website and noticed all the chatting going on. I guess I'm still doing alright since my dr. visit in Dec. Don't know if it's the wintertime thing, but
I sure do feel tired all the time. Gaining weight too.
Excercise probably would help, but my job is very physical and long hours make it impossible to have energy at the end of the day. I start work before 6 in the morning and don't get off till 4:30. I'm pooped!
I'm glad to see more folks on here as well a new gentleman too. Good to get input from another guy you know!
I'll stop by from time to time. Take care all, spring is near!!
Hi All
Anita
I was put on a low protein diet in 2003. No dairy, cheese and only 100 grams of red meat a day. I do enjoy a good salad, but as an aussie male, the idea of tofu on the BBQ just didn't do it for me. My current nephrolosist explained it to me that it's the body that produces the protein and just to eat a balanced diet, as long as the pathology is ok. My previous nephrologist had a different veiw. That the protein intake will reflect in the pathology results. I like my new nephrologist!! Also, I use facebook to keep in touch with my children. I'm ok with a link on that.
Tom
It has been a long time since I have been called a gentleman, I get called by many other names, which suits me as I have a great sense of humour. Helps me through this I can tell you. Enjoy your spring, I am looking forward to Autumn next week as I'm sick of the heat.
Re Spirits
I noticed a few comments on spirits. I used to like a cold beer, but got a bit nervous with the FGN, so I've changed to scotch. I have a couple every night and my BP stays at 130 ish over 80. If I don't, my BP rises by 10 points. Don't know if I'm doing myself any favours, but I reason that a couple of tots, in moderation, keeps the system calm and the BP down.
Is anyone else on long term medication?
I'm on cellcept. I've been on it since 11/07.
Tom-I'm tired all the time too! I wish I had energy, but it takes all I have to work and raise two active boys!
Anita…
My nephrologist hasn't restricted my diet-just to eat healthy.
Sue! Hi! Sorry I didn't return your email. I don't recall seeing it! I'm so eager to talk to anyone that shares this disease of mine!
Goodnight everyone!
I am on Cozaar for BP and Pravastatin for cholesterol which FGN causes to raise. Both are daily and probably will be forever. I am going to see a dietician to see about a renal diet.
Jeri~
I'm on BP and Cholesterol medications too.
Hi everyone. I have noticed that some of you have cholesterol problems. I don't have that. My last reading on my pathology was in the 3's. I did have a cortisone shot once, about 7 years ago, but that was for hayfever. I did notice that I put on a little weight, but I was more concerned that if I knocked something with my hands, that the skin would break. Other than that, no further problems. I just had to work this back, as we work in cms and kilo's, but roughly I think my weight is about 190lb and my height about 5'11". I will have another look at my pathology results to check if the cholesterol is rising.
Here we go folks, hope we can stay in touch and continue to support one another: http://www.facebook.com/?ref=home#!/group.php?gid=355521563763
So far I am not really on any special diets, but my neph. sure knows when I've had too much salt or protein.
The only medication I am on so far for this is Metoprolol at 25mg twice a day. I haven't had my cholesterol checked in a while, better ask for that next visit.
I have not been able to find any more information on this disease that we don't already know. So looks like I'll have lots of questions for my neph.
Snowing like crazy here, schools have let out early and I am freezing in this ice box of a house. Take care everyone and have a great weekend.
Anita
It makes me nervous that I'm on Cellcept. I trust my doctor completly and he consults with a group of nephrologists on my "case". I just see others with this disease nothing other than high bp meds or cholesterol control meds.
I saw my doc yesterday and had a good report. I was spilling a bit more protein in my urine, but he wasn't overly concerned. I'm trying not to be.
Anita...I can't open that facebook link...what is the name of the group! Thanks for all your doing for this cause!
Peter--no emails for you! Hope all is well!
Hey Trish, do you have a facebook page? When I clicked on it it took me to login, but after I logged in it took me to the home page. I'll try it again.
So, from what I read about Cellcept, you are being treated as though you have already had a kidney transplant????
Are they preparing you for one right now? I'm just wondering if taking it for this long "pre-transplant" will effect the medicatins ability "post-transplant". I'm confused about that. Hope everyone is staying warm. Chow!
http://www.facebook.com/home.php?#!/nitacheetah65?ref=profile
Try going to my page and finding where it's posted that I started the new "FGN" page.
FGN (fibrillary glomerulonephritis)
If that does't work, I'll ask one of my girls for help. I'm still a little computer illiterate. LOL
Hi Anita and Everyone,
I'm so sorry that I have forgotten to stop by here. I am still kicking and still no dialysis yet for me. I have more health issues, but I guess that is to be expected.
Regarding cramps and pain - got some of that in a bad way. I went through a series of pain management procedures in my back, sort of like surgery for/with injections. I did about 5 rounds of that over a 1yr period. Most of my pain I refer to as spasms. It is like lightening bolts of pain that are continuous, never ending. Those happen in my legs and in my hands. I've had quite a few less in the past year and I think it might be related to diet.
In 11/08 I was diagnosed with Type 2 Diabetes. We are trying to regulate it with diet, my only other choice being insulin injections vs the pills available, due to the FGN. I lost about 85 pounds, but due to stress and family issues I've gained back about 15 pounds. I've headed back to the gym.
I've always known my body to only lose weight IF I exercised, I could never do it by diet/eating. I really love working the machines, hate the walking/biking part, which I try to avoid at times. I will also do water aerobics. Overall I bench over 14,000 pounds on 8 machines. The exercise has helped me immensely - physically and mentally.
I did waver though and am working on getting back on track. I liked how I felt, the healthier me, and that's what I want to work for me. I am my doctor's only patient that works hard in this area.
I'll go check out the facebook page. I appreciate reading everyone's story. I think this is a great idea.
Sue
Hi all
Trish
Will write an email to you tomorrow. At home at the sever desk.
Anita
I tried to log onto your facebook link and it just went to my homepage. I have two sons who are IT guru's, I will ask them to have a look at how this can be streamlined if that helps. We do web hosting as part of the family business. I could also ask them to mount a web page here, no cost involved, if that is of interest to everyone. We have sever space for another 900 websites I think, but this is not my area.
Everyone
I am getting further confused on FGN. The more I read on what happens in your lives, like diabetes and cholesterol, the more I don't understand why I don't suffer from these. I do suffer cramps at times, have not had one for two months. The last one had me off my feet for two days, it was so bad it crippled me. I have started using sea salt in moderation. It does not seem to effect the BP and the cramps have stopped. Unlike yourselves, it is still summer here and I spend a lot of time in the heat. If anyone was getting cramps, it should be me through sweating outside. I still believe that there is more than one strain of FGN. Or maybe there is something about me, be it my genes or DNA, that moderates the effect.
The other change in my life is coffee. I used to drink heaps each day, milk and two sugars or short black expresso's. I have weaned myself down to two cups a day over the last few years. Don't know if that's relevant. I drink spring water during the day. Another possibility in this is Fluoride. When i was first diagnosed with this, the town water supply had fluoride added. then I spent two years in the tropics. No fluoride or chlorine added, it was straight spring water and my symptoms seemed to die away. Where I am now, they never added fluoride until the last 12 months and the symptoms are back. Could be a coincidence. i would be interested in your thoughts on this.
Hi Again
I just found this. If I'm barking up the wrong tree, please tell me. Bear in mind I'm not British!!
From my understanding Cellcept is a drug that is given to help to slow down the progress of the disease. My husband was on it for that reason. Sorry to say it didn't work for him. Also Predisone was given. Both of these I believe made him feel even worse. He has been off Cellcept since December and they are now weaning him off Predisone. Predisone is not a drug you can quit cold turkey so if any of you are on it you have to slowly go off.
Take care.
Sue,
I hated predisone! I felt horrible on it. I had high blood sugar levels and LOW ones. I gained an obscene amount of weight. I was happy to be off that drug. I've been on Cellcept since 11/07 and I haven't had any side effects. All my blood levels have been great. I would prefer to not be on anything, but I'm scared to death of dialysis.
Sue do you have FGN or does your husband?
Have a great night!
Trish
Trish,
I just sent you an email. Let me know if you received this one.
Sue
well hi
i just found out about a month ago i have fgn it seems like my kidneys are in bad shape i have read a lot but any thing they do for this disease does not work. so i opted to take the bp meds and hope for the best the nefrologist said i would have to take dialysis in about 2 years. linda
Hi Linda and welcome. Stay on the site and I think it will really be some support for you. This seems to be a rather rare disease, but I am wondering if it really is. It appears to me it is like SIDS it has always been around, but have just named it in the last few years.
Hang in there Linda.
Sue
Hey everyone, and hello Linda.
Trish I had the same side effects with prednisone as you. Still to this day, when I have to go to the ER for a shot for a migraine, they are always adding some kind of steroid to the mix, even when I ask them not to. But if it hurts bad enough (disabling) to hit the ER, I'm not in any shape to argue too much.
Peter- I think you are on the right track with the H20 thing. I don't know that it is a cause, but I'm sure that it horribly worsens things. We have warnings about our drinking water mailed to us every 3 mo. or so. But I cannot afford to buy bottled water very often. So what can you do.
*How many of us are actually on dialysis yet?
And how many have just been given an approximated guess?
I'm on the "guess" list and I really do hate the worrying and wondering. My one brother is the only family member I would even have asked, and then I wonder if he will even be a match. I guess that the sooner we have that checked out, the better.
My back has really been giving me fits, along with the above mentioned spasms (and M.J.'s throughout my body) if feels horribly out of place a lot. With the chiropractor not being able to make any head-way, I'm wondering if it's my kidneys giving me the pain. Each nephrology appointment shows signs of the damage progressing, and only a biopsy can tell how badly. I'll put those off as long as I can, as my first and only experience with one was some of the worst pain I have ever been in.
csue99- when I had those lightening bolts, it was because I was low on sodium. I would check on that.
Will be back later on. Quiet day with no kids or baby. So I am going to try to get more work done on here.
Have a lovely day all !
Anita
Thanks for the info Anita. I have bone spurs throughout my body, some are awfully large. The neurosurgeon believes that it's the spurs that hit my nerves that trigger the lightening bolts, but who really knows.
I do get gout on a painfully regular basis. I also have a lot of neuropathy issues in the feet. I've been confined to a wheelchair at times, but am doing reasonably well at the moment.
Interestingly, my doctor says that kidney disease could be linked to hereditary issues but it is not conclusive. My paternal grandfather had kidney disease, which I only learned about 6 months ago. I don't necessarily care how I got it, I want to do everything in my power to keep it at bay for as long as possible.
I do wonder about how things play out with my children from my genes. My oldest has MS and is a cancer survivor (throat and tonsil cancer) at the age of 35. He's also had the equivolent of open heart surgery to remove a thymus tumor that looked like it was attached to his heart. The tumor was the size of an egg but not touching the heart and was removed successfully. He was in Stage 3 cancer just about a year later. He now may have sarcoidosis disease, he has lung issues. If he has this newly diagnosed disease, then he will also be retested for the MS because sarcoidosis can effect all the organs and the lesions on his brain may the one over the other, only time will tell.
My youngest has just been diagnosed with Type 2 diabetes at the age of 33 plus has bone issues as well as thyroid issues.
My middle child has other issues but nothing that so far has harmed her physically.
I wouldn't wish any of these things on my children and I'm saddened that they have to suffer.
Sue
Sue...no email!
trishyo@gmail.com
csue: wow we have a lot in common. I am filled with bone spurs also, the most painful are along my spinal column. And the neuropothy problems in the feet also put me down often. I have just taken up with a foot and ankle specialist at Ohio State for this. My daughters have the same problems with their feet also. With my polyp issues, most of which are hereditary, my children now see a genetic specialist, and I am now thinking I will ask about the hereditary issue of the FGN. It could be bad for my girls, as they have kidney issues on both sides of the family.
It's strange how I can have osteoporosis with a deficiency in bone mass, but have the problem of bony tissue building up everywhere else. My heart reaches out to you for your eldest child, that is a lot to go through at his age.
I have wheelchair bound days also. People I know questionly stare, as I can have many good days and be prancing around, then have to use a chair to do my shopping at W.M. a few days later. That comes from my fibromyalgia I think.
Dearest Linda: welcome again. Would you like to vent, maybe fill us in on how your days are coming along? With this disease being so questionable, I'm sure you wonder most days as the rest of us do. You are welcome to talk to any of us. Most of the group here have been willing to share their email address' and are here for you if you have questions you don't want publicized. We all have good days and bad days. Most of us are quite fatigued as well, but our hearts and hands reach out for one another.
Nanna here is babysitting most of the day today, so I'll be in and out per Eastyn's requests to be held and loved.
Have a beautiful day everyone.
Anita
Hi All
I get so blown away when I look at some of your stories and can't help but feel that I'm the lucky one in this group. I get tired at times, but otherwise I'm fine. I am also lucky in that I have a very supportive wife you children who are very good at researching. I mentioned before that my little group here have been looking into the effects of fluoride on kidney function. There is a great deal of information about, but so far nothing that links to FGN. However in saying that, they have found research that links fluoride to renal patients producing protein. In one particular research group, when the fluoride was removed from their diets, their bodies stopped producing protien. It didn't say how they managed to remove fluoride from the food and water consumed by the target group and with what i have seen, it is present in everything. We have one of the world's best medical research centre's here where I live. I will be raising this with my nephrologist on the 21st March in the hope that she may ask one of the research teams to consider me for a trial.
Still here: Thank you for that information. I would be very interested in your trial if you should be selected. We have two great centers here in Ohio also, but I'm smack dab in between the two of them, which are a few hours away. That's hard to do when you have 2 girls still at home and a grand baby to keep most of the time. Maybe one of these days when they've grown and are gone I will get myself into something like that.
I'm glad to hear that you are still in great shape. May you have continued good health.
Anita
Hi Anita
I'll have to change my name back to Peter+++ whatever will register. Will write to you direct when time allows.
Still here: Maybe I shouldn't have used it in my paragraph? It's busy around here too. Looking forward to seeing what you find.
Anita
For the last 3 days, my calves have been so tight they feel as though they may bust. My feet and ankles aren't in the greatest of shape either. My right knee feels strange, as though it were holding fluid also. So, do I call my PCP, who is new for me? Or do I give my nephrologist a call? I'm pretty sure this is a kidney problem, as this is not a regular occurrence. I was just wondering if this happens for anyone else, and if so, what you might do to give yourself some relief? I've got another 2 weeks nearly before I am due for my appointment with my specialist. Guess it's just scaring me a little because I haven't really talked about this one on one with anyone yet. Hope all is well out here with everyone. And I hope you're having a great weekend.
Anita
Hi Anita
I'd be calling the nephrologist if I was in your shoes. Outside of my BP medications, I also take 40mg of Frusemide a day for fluid. I haven't suffered what you are describing, but my ankles were showing a very slight swelling, which the fluid tablets have addressed in short time. If you think it's a fluid build up, then don't play with it. I'm currently doing my 24hr urine, my blood tests are in the morning and I see my nephrologist next week. If my protein has not dropped from last time, then I'll start to worry. We all have our moments when we get scared with this. Your page has given a little comfort to everyone who stops here to tell their story and i think I could fairly say that we are all glad you took the time to start this.
I so pleased to find this site, I have had FGN for six years. the nephrologist told me I had a very rare form of FGN, 29th in the world. I don't know what else to say, I'm just so pleased to have found the site. The medication I am on are ramipril, frusemide and some other new tablet to control my BP.
I would just like say I feel a really good therapy is to go to a meeting personnally and talk face to face with people who have the same problems that you do. My husband already on dialysis goes to the clinic sponsered by the Michigan Kidney Foundation. Tonight we had a dinner meeting with the other people who go to this clinic. They all had stories of their personal experiences. Some have been on the hemo dialysis and others one the CAPD. A couple of people there have had transplants. This group gets together once a month and they have dinner and a speaker comes and talks on different topics. Next month a kidney surgeon from one of our local hospitals will be there. Just to be able to learn one on one from some that have been thru so much is so very helpful. One woman was there with her husband and will be going on dialysis in about 6 weeks was very confused and scared about which type of dialysis to do. Myself also being new to all of this felt the need to talk to her and try to help. I remember being so very scared, but now realizing it is not the end of the world. I am sure you all have Kidney Foundations in your states or your country and it really would be worth your while. If they are anything like the people at our clinic they would certainly welcome you. Being on this hub is nice but when you are one on one and get the answers from experience it is very helpful. Good luck to all and have a great summer.
Sue- this is fantastic information. I wonder if I would be welcome since I haven't had to do any of this yet? We have a place in Zanesville, Ohio. I see cars there all times of the night. I think I definitely will stop by there one day and ask to speak to someone.
You are such a blessing to this group. I send hugs and prayers your way quite often.
I am going to try to just take care of myself the best way I know how this summer. I'm going to try to enjoy our new blessings. I know that the day will come that I'll have to concentrate on dialysis, transplants, and all that. I'm blessed that I don't have to at this moment. And to those of you who do, I wish I could be there for you. I hope I have the strength and courage that you do when the time comes.If I'm allowed to attend such meetings, I will keep you all updated on what I learn,as I go.
Love to you all.
Anita
Anita - I am very sure you would be more than welcome. It is a very good feeling to be around people that are in the same situation and are going thru this. There is so much to learn and these people have different reasons for there kidney failure. One woman that was there is legally blind from diabetis, has had part of her leg removed, has been called twice for a transplant, but was unable to go due to diabetis flare up and her spirts are soooo high that it is amazing. Another woman has kidney failure and cancer that she has been a fighter for 12 years now. I think you would really like it if you went. We were wondering about going, but the foundation has been so wonderful and the people at the clinic are great that it makes things so much better. I am really happy we went and it is something we will be actively involved in.
Thank you Sue. And WELCOME KATHY! You will find all kinds of support here. We are all in the same boat. I have faith that one day we will ALL have answers. Bless ya.
Hi All
Saw my nephrologist today. I went in thinking that my pathology from last week would be all bad news. On my last path, my protein was 7 grams, my cholesterol had risen to 3.9, but everything else was within normal limits. The report i received today was that protein had dropped to 6 grams ( still way too high), the cholesterol had dropped to 3.2 and everything else was in normal range. I raised the question, or rather my wife did, as to whether there is in fact more than one strain of FGN. The answer is still they don't know. We had a long discussion on what causes this, what research is being done and by who. It still appears that we don't have enough numbers to warrant anyone doing serious research on FGN. I have taken advice from my nephrologist to vary my medications, mostly aimed at lowering the protein levels. I have also volunteered for any research they wish to do on this side of the world, if it can get any closer to finding a cure. I have now had this for 7 years, but I don't understand why we seem to have different symptoms. I pointed my nephrologist to Anita's hub, in the hope that she may find time to pay a visit here and read everyone's story. My prognosis at this stage is that I am going well and the progression is very slow. It may be some years before I have to come to terms with dialysis. i raised the question on flouride in our water tables, once again, not enough research has been undertaken. I trust this finds you all coping ok and I hope that a few of you can make contact personally. I would love the opportunity of being able to have a chat with someone who also suffers from FGN. I hope I can find at least one of us over here one day.
well, i havn't been on in a while, but my mother did give me a list of some of the meds my dad was on. aparently everything boils down to the fact that they took too much fluid from my dad through dialysis too quickly and even his healthy heart couldn't take it. with all the pain meds his symptoms of heart failure were not apparent right away. i am doing everything i can to find out more. as soon as my mom releases the rights to his medical record i can personally talk to the specialist.
my dad was on prednisone, metroprolol, norvasc, sodium bicarb, lipitor, nexium, asprin, magnesium, lasix, ptu, coumadin, and hydrocordone pain meds.
All of these were EVERYDAY! that can't be good. He had never taken anything but a vitamin before May! All of these meds he was taking from june to aug., so even if they were going to work, they didn't have a chance with the short duration. I hope this will shed a little light on something for someone. University of Rochester was his specialist. (NY)
Hi All
Just a question to all of you. When I was first told I had FGN, I was told that it effects 1 in 2.5 million people. With the readings that I have done over the internet, I get the impression that the figure may in fact be far lower in ratio than that and is climbing. Does anyone have any current figures on this that they have researched?
Robin, My husband is in dialysis now and my understanding is that you can only take out as much fluid as you have. That it will not take anymore than that. Now that is if you dad was on the CAPD type. If he was on hemo I don't know. But the CAPD doesn't remove more than it should. You know when you are finished if you get a slight cramping from it. Sometimes you don't even get out as much as you put in. Let me know what type of dialysis he was on.
Good Luck, Sue
Just to say I'm from Wales UK. I have learnt so much by reading everyones comments.
Here's a question - for those of you with swelling issues, is it an all day thing or a night thing? My feet are starting to swell just a bit. I can tell when I take my shoes off that they are starting to get a bit puffy as well as my fingers. I just don't want to have to add another pill yet. Other than that, things are still normal.
Anita and bloggers,
Thanks so much for doing this. You have helped me to get a handle on my mums disease: FGN with multiple myeloma. Last week I was given these names, so hard to understand until your blog.
PLease know that FGN has been evident in blood tests done 18months ago, only after blood tests being rechecked, FGN only diagnosed in Melbourne 6 months ago. So important to get things rechecked.
What type of farming were you involved in? Many generations of our family where wheat and other grains and sheep farmers, mums exposure 1940's til 1990. Flouride was not in the rainwater tanks used for primarily drinking but when we moved to town it was present 1974 on.
What is Seven? is it a glyphosate? or similar to "Round up" a common Australian garden spray used on weeds?
Symptoms: The swelling is quiet shocking, steroids really wreak havock on the body but we see it in appearance and skin and dreadful tiredness. Its like you asked the tyre man to fill her up as tight as possible then added fifteen pounds.
It is kind of you to keep this blog going,
Thanks again, God bless..
I was diagnosed in January 09 with FG and Hep C At that time my Creatin was 1.7 after 24 weeks of HepC RVR(rapid responder) treatment my level has dropped to 1.3. I go back to the Hep C doc in June to see if I have sustained viral respone (SVR) I go back to the Kidney Specialist April 29th for my 6 month testing. Currently taking blood pressure meds and lasix. I probably had Hep C for many years as my liver is damamged dont know how I got it and at this point it dosent matter. Could this have caused the FG yes according to studies however after biopsy it was found to be unrelated by the pathology reports. So... Not sure how I got this and would like to know more. I'm hoping when I go back to the Doc later this month that my levels are still good. I'll let you know.
Thanks
Stay Strong!
hi kathy. my dad was also from wales. (sheep and crop farming his whole life) even when he came to the states to have me, 1975, he continued light farming.
i am so curious of this disease. i could have gone my whole life and never heard of this disease, but instead it has shaken my whole life and i refuse take things lightly. Our loss will be someone elses gain.
i am so thankful that all these people have gathered to connect and learn. the doctors should be the flies on these walls.
Okay folks. First I would like to say hello to all our new friends.
Peter- I am so glad that things are staying at bay for you. Maybe our cultural differences play a part in that, maybe not. Things like your diet and such? Just added you as a friend on Facebook so we can stay in touch more often possibly. And, I have seen just about the same findings that you have. If I ever see anything different I will let you know.
Robin- I really hope you find some answers for your peace of mind. It's got to be hard when it was as sudden as your fathers. And you're right, about loss/gain. Speaking of Dr.'s being a fly on these walls, I was shocked (pleasently) to see MY specialist on a chat wall somewhere I can't even remember now. He was like the featured speaker on a Q & A site about this and other kidney diseases. Makes me feel kind of secure knowing he was on a national level like that.
Kathy- I hope we can all be of more help and comfort in the future.
Jeri- my feet and ankles aren't prejudice. I can wake up in the morning with my swelling. My hands, not so much any more. Good luck hun.
Fiona- I have heard of the multiple myeloma deal. More on what is called "smoldering myeloma". The only farming we were involved in was beef for my grandparents who lived very near by, and whom we visited regularly and also helped in that area, and my family had a huge vegetable garden, and also a tree farm. Seven is similar to the round up, only in a powder form and also devastating to the bugs. I hope you will join us often and keep us up to date on your moms health.
Helen- Now I am very curious about what I have read about the Hep. C. and other autoimmune diseases being a pre-cursor for FGN. Going to have to be more inquisitive I guess. Good luck on your next Dr. visit. You stay strong too. You've got a lot going on girl.
SUE- (not csue) but Sue Mullen (smullen923@gmail.com)- I am very thankful for what you have contributed to this page. Your information has been appreciated. BUT you are an abusive person. Just plain old mean. I don't know what I have ever done to you for you to call me a liar about my disease and insinuate other things. And this is just all out of the blue. I kindly added you to my friend list on facebook. I checked in once in awhile to see if you had any good news. Please stay off of our site. Well, I guess if you can only share about progress that would be okay. But I don't need you here causing trouble.
I'm sorry I had to share that with you. But I have gotten some pretty disturbing emails from Sue lately. I don't know what is going on with her. Guess I can only pray for her. But if you doubt me, then don't bother me.
I'm just about like Paul here, my disease is progressing slowly. I do have some sudden changes interrupting my life from time to time, but nothing to worry about for the time being. I stay in touch with my nephrologist frequently because I don't really know what to expect, and when something changes, I'm right on the phone with the office asking questions.
I don't come on here every day and complain. That is what my facebook is for. LOL
I hope this finds you all well. I have been busy with workers compensation ordeals, hearings, exams and such. And then I am in therapy for my injury 3 days a week, and baby sitting a teething 4 mo. old nearly every day for 6-12 hours. So I'm not on here as much as I would like to be.
Please forgive me for that. I will, however, try to check in more often. Especially when I have news, or learn something new. So far it's been the same old/same old.
God bless and keep you all. Have a great rest of the week and a great weekend.
Anita
Can someone please send me a link to the facebook group? I have just opened this to look for information for my friend... my email is wepnwilo2@comcast.net Conversations have been very helpful.. For my friend..
Hi All
My new meds have been working well for me. My problems with FGN have been the protein and BP. What forced me to go back on the meds was when I found out my BP had risen to between 180-200 over 120. My GP was very blunt with me, which was either treat this or suffer a stroke. I am currently taking 40mg of Frusemide and 8mg of Perindopil in the mornings. My evening meds are 10 mgs of Lercanidipine and 40mgs of Telmisartan. My Neprhroligist suggested the Telmisartan to assist with both the BP and the protien. I think I previously mentioned that on my last blood test, the only thing out of the normal range was my protein, which was 6000 mgs. My current BP's are around the 120 over 80, if I have two or three scotch's before hand. Without the scotch, I record 130 over 90. When I last explained this to my Nephrologist, she said all things in moderation. I have my next set of blood and urine in July and I'll find out if the Telmisartan has helped with the protein. Like the rest of you, I get tired. Hope all of you are doing ok.
Anita
Just to say again thank you for taking the time to start this. We would find it harder to find fellow suffer's if you didn't
Hi everyone, I have been busy these last couple of weeks, visiting France.
Anita, you are right, none of us know what to expect. I got to stay positve and on times even laugh when my ankles are swollen. It always happen when I what to wear a dress with nice shoes.
Hi Robin. Please don't ask me to write in Welsh, I've got the accent and that's about it. My Grandparents were from Ireland and Scotland. I'm from S.Wales the Valleys.
Take care all of you and God bless
PS. Seeing the Nephrologist the being of May can't wait to tell him about this site. I should imagine I will have a blank look like always. Oh well folks, "keeping taking the tablets."
Hello Wepnwilo- I searched you on facebook and sent you the link for the page there. I hope we can be of some support for your friend.
Still Here- Thank you so much for your encouragement. I will keep you in my thoughts and prayers, as I WILL ALWAYS TO THE REST OF YOU TOO.
Kathy- I hope your visiting was good for you. We all need to do that occasionally. Kind of get away from all the strings stressing us.
I may not be on for a week or so, as they are coming to turn off my electricity today sometime. No income for the past 2 1/2 years has really hurt me. But I have all of you, my family and friends. And I have my girls and my beautiful grandson.
I have got to see Dr. Rovin soon. My feet, ankles and legs just keep getting worse with swelling. And my blood pressure hasn't been good the last couple of weeks. I get all shakey if I'm only an hour late on taking my BP medicine. My head pounds along with my chest.
EVERYONE- take care of yourselves till we speak again. Keep us up on how things are going.
Anita
Anita, you take care.
Hey fellow FGNer's - I've found out recently that I have a severe vitamin D deficiency. After researching, I've come to the conclusion that my kidneys and our wonderful disease could very well be the culprit. So maybe when you have labs again, it might not hurt to ask them to draw a level on Vitamin D. I'm on prescrition Vitamin D2, which is 20,000 units or mg. a week for at least 16 weeks, with a refill thrown in for good measure. I go for renal labs in a couple of weeks, so I'm anxious to see what they look like. Hope everyone is doing well.
Hey everyone. Got an extra 30 days on my electric. Yee haw! Was awarded my worker's comp. payments. So we are good!
Thank you Kathy for your kind email.
Jeri- that is some great information. I will ask Dr. Rovin about the Vitamin D deal. I have osteoporosis and am pretty sure I have a slight deficiency. But because of only having a small portion of my small intestine, I do not absorb Vit. D. very well. I will have to ask about maybe an injection.
Good luck on the new labs. I am about to have surgery on my neck for 2 disc protrusions, and for some reason am more worried about that right now than the swelling in my feet, legs and ankles. I will update when I hear about my money, and my surgery. Will be on the laptop the week in the hospital so I will be able to keep up.
Have a great week everyone. Don't forget to stop in and share on the facebook. We may end up with more people suffering along with us than we imagined.
Caru chi i gyd!
Love libh go léir!
Love you all!
So.... Dr appointment was ok GFR is 1.4 so stable with stage 3CKD. Blood pressure is up from last appointment so they are putting me on ace inhibitor in addition to the other meds. I'm going to work on getting my BP down today it was 140 over 100 up from 1 month ago 120 over 80. Some cause for concern will go back to Dr in three weeks to check functions after starting new meds. Thanks for giving me aplace to share. It's not always easy talking to friends and family about this.
ThanksAgain.
Jeri - in regards to the swelling......yes, it is all the time. Sometimes it will result in a bad run of gout. Currently my left ankle/foot/leg has been swollen for just about 4 weeks but no gout. My dr even ran an extra test to see what might be going on - didn't come up with an answer. It is very frustrating. My lightening bolt spasms of pain has increased during this time as well. That used to happen only at night but this time it occurs at any time. I had one day where I must have had a gazillion baby bolts, and if I moved wrong, the grand-daddy one. One day I had the phone in my hand to call 9-1-1, the pain had lasted so long and there was no one here to help me out, grandbaby too young for that.
I am very frustrated with my body at the moment. I do have an incredible amount of stress in my life right now - maybe that has triggered this crap. Who knows.......
It is never easy talking to anyone who hasn't got a clue. If you're not on dialysis yet, they think you're okay. There are so many unanswered questions for each of us. Loneliness, frustration, anger (at times), hurt(physical, mental, emotional). We don't have any one here yet who is in the final stages of this disease. That is scary to me. But sharing our fears and questions, really the same things, is what we need each other for. I feel blessed to have you all.
Hi All
The way I see it, most of us have found we have FGN by accident. I may be a little different to that in that I did have symptrons which told me something was wrong. My first Nephrologist stated to me that I was lucky to find out in the early stages. The common fact is that none of us really know how long we have had this. From what I can gather through the medic's, Gout and Hep C may be links, or Gout could be a problem that developes after contracting FGN. I sometimes feel that trying to find an answer is like playing pin the tail on the donkey. We all seem to have such different problems with this, the only link with all of us seems to be that we all have FGN. Is it possible that we are all asking the wrong questions? We all talk about our confusion with FGN, but are we really compling information that may help us all. If you all disagree please tell me, but I feel as a group we should turn towards trying to piece together what started this in all of us, as well as finding ways to cope with the different ways it affects us all.
I have been thinking what 'still here' said,
Nine years ago I had chickenpox I never had this a child, I was 36. I have had blood tests for Hep C clear, gout once.
Just thought of something else. drunk a lot of cans of coke. and i mean a lot. I'm goimg to bed, so sleepy I could sleep on a chicken's lip.
Good night & God bless from Wales
cortisone, yes I had this as well 9yrs ago, I am going to sleep, Bye
Chicken pox when I was little, never had gout. Have had some dental issues and was using over the counter tooth care meds and penicillian. Sinus issues used over counter sinus meds.19 years ago steptic infection after a hysterectomy in intensive care 1 month on many meds. Premarine after hysterectomy quit when linked to breast cancer scare. Took lipitor for a while quit I didnt like it. Enjoyed alcohol when I was younger. Grew up in the city. Dont know how long I've had FGN diagnosed after I went to the DR for what I thought was a head cold, they found blood and protien in urineand here I am.
Thank You Helen and Kathy
The Cortisone is interesting, as I had cortisone shots to help my hay fever, this was prior to being told I had FGN. Yet, our doctors mention that cortisone based medications may help with FGN progression???. Without going through what I have posted here before, we are led to believe Gout is associated with what we have, as is Hep C. I have had very minor bouts of arthritis, mainly in my fingers when winter was coming on, but otherwise I consider myself a lucky man. My wife has been doing a bit of research and she has found a parasite that can affect the protein in our kidneys. I will be seeing my GP next week to ask for a blood test for parasites, as I have spent a number of years in the tropics. Will let you all know on this.
To all Mum’s, I wish you a Happy Mother’s Day. To all partners, I remind you to at least buy your better half some flowers!! May all of the mums get breakfast in bed and a great day out. I intend being up from 6.30am to direct the day’s activities for the love of my life, who has put up with me for the last 35 years. Hope this finds you all feeling OK.
Helen, I had a hysterectomy about 7yrs ago, 'Still Here' I'm going to see the Nephrologist Monday. What am I going to say, I'm lucky to have five mins with him, before I'm pushed through the door. They blank expressions when I ask any new news on FGN. Dear God why don't they be honest and say "we've not a clue." The only doctor who was open with me, was when I went to the Amyloid centre at the Royal Free Hosiptial which is in London.
Hi Kathy
I am lucky in one respect, that my current Nephrologist will spend 30 mins each trip in discussing how I am going and possible treatments. But in saying that, at least she is honest in saying to me that they don't really know what to do, as they don't know what causes it in the first place.It's all trial and error. We can either keep asking questions and research what we can, but I think all of us would agree that the medical terminology in reports that are available on the net can be somewhat difficult to understand. My wife spends up to 2 hours a day surfing for any information she can find on FGN. She has found possible links with chemicals and her latest possible is a parisite that can force the kidneys to expel protien from the blood, which is a possible fit. What we all need to find is a renal researcher who is willing to look a bit harder, but they don't grow on trees. I have asked my nephrologist to put me up as a candidate for anyone over here who needs a research subject. No bites yet.
I used to loose a lot of sleep over FGN. I don't now. I keep looking for possible clues as to what started this, but I also spend as much time with my family as I can, while I'm 'still here'.
Peter
Good to see everyone still kicking. I hope all of the moms had a wonderful Mother's day!
You're right Peter. And I am glad in many ways that I am seeing a Dr. at a teaching hospital.
I have had arthritis throughout my body since 1989. I was very young, and it was always a supposed result of my total colectomy(absorption problems).
I am 45 now and have trouble even walking. I hurt so badly at night it's hard to sleep. I'm looking into a really good mattress now to help with the discomfort. My mom had one of those pads you put over your mattress that has the magnets in it for years. I may even go there.
I'll try to get to my point. LOL
I have been going to a genetic specialist for the last year also, to try and find the genetic marker for the types of polyps I had as a child too. So far no answers, and I'm really beginning to wonder. A genetic problem that no one else has in my huge family. And no normal genetic marker.
Makes me think Peter, about the parasite thing. I don't know what kind of tests to have run, but I definitely will be asking Dr. Rovin about this at next visit. Which is so messed up again. My surgery for the neck problem is scheduled a day before my visit with the neph. so I'll look into maybe getting one sooner.
I have had a couple of emails from a very nice lady here in Ohio, who is at a bad stage in FGN. Hopefully she will be joining the conversations soon. She is at dialysis/end stage renal. She is also a pastor, with great faith. I hope that we can support her and that she can open up with us and share what she is going through right now.
I am looking forward to learning about her progression. She was found to have proteinuria nearly 26 years ago.
Heading to the big city for some pre-surgical testing today, yippee. But I'm going to try to get out of this slump I am in and get back into research. I'm very thankful to Peter's wife for being so vigilant.
Have a great day everyone!
Anita
Hi everyone, well, I went to see the Nephrologist, I must say a very nice chap. He was new. I have been told that I'm passing a lot of protien, He told me that what the blood tests are showing that its like if I got Amyloid. Which I haven't. More tests and see him in two weeeks. To be truthful if you saw me you would never thing there was anything wrong with me. oh well I'll keep taking the tablets. Take care all and live for today.
Okay, so I can scan and copy to this page the lab report I got from my PCP today if any one needs me to, but I got to tell you Jeri, you are on to something about the vitamin D deficiency. My levels were 20.4L The normal range I guess are listed on here as32.0-100.0
Dr. Crapes made a copy of this for me to take to the nephrologist. She had a note on here about "lets wait for urinary protein level". She gave me an order for some other tests.
Just plain strange, and it hit me like a ton of bricks when she said that. I had to tell her about the hub pages. LOL
My calcium, serum was at 9.6mg/dl with normal at 8.7-10.2
And Stillhere- I came across this: http://www.lookfordiagnosis.com/faq.php?term=Glome
It talks about the parasitic factor. I'm so glad I have all of you! Maybe together we can make history for this disease.
Hey everyone!
Greetings from rainy & dreary Kansas :( Anita, my PCP told me that I had the lowest level he had seen in his practice at 8.0 for Vitamin D. I swear, if it's weird or rare I'm going to have it. Will go next week to have renal labs done for my appt. on the 26th with my nephrologist. Will be anxious to see what labs look like, as I had the IV Reclast for osteoporosis. My nephrologist said to take care of the bones and we'll deal with my kidneys if the osteoporosis meds affect them. I think it's just a viscious cycle with one thing leading to another... But I'm still upright and my baby is graduating college this Saturday!!! With honors!!!
You are absolutely right Jeri about viscous cycles! That is very low too. I was doing the Forteo shots at home every day, but it gave me debilitating migraines and I had to stop. Let us know what happens?
My daughter (the one who made me a nanna) graduates high school next week too. I'm just glad she made it after having the baby.
Great job to your baby for honors!
Back to the specialist he took me off the Ace inhibitor my creatine was 1.4 two weeks ago and is back up to 1.6 he doubled my blood presssure meds and set me up for more tests
in two weeks hopefully that will bring my number down he says that if my numbers keep rising I'll be on the big D in 6 months.
Stayin as strong as I can!
Hi Helen
In 2003 I was told to take any overseas travel I wanted then, as I would be on dialysis by 2005. It's 5 years later, my pathology is good ( with the exception of protein) and I am still running around enjoying my life. We all know that they ( The medicals) don't know. If anything will drive up your BP it is stress, so simply don't. A very wise old man once told me to worry about the things I have control over and not to stress over the things that I cannot control. Best advice I have ever received!! Keep your chin up, I am currently looking into a discovery on T Cells here that may be related, as well as the possible parasite connection. Hope to post some interesting info for all of us soon, but want to make certain that it's relevant first. Trust this finds all of you happy and well.
Peter
Helen, Peter is absolutely right. I was really letting this all get me so down, that I wouldn't even come out of my house. Peter has found some great information. I did some digging and got the email address for my neph's secretary and I'm going to send a copy of a lot of this info to Dr. Rovin so that hopefully he is prepared for me on June 2nd. He is not going to get to run out on me so quickly this time.
Have any of you ever been told (and then tested constantly) that you have a high "white" blood cell count? I have been told this for many years, and was always told after numerous tests that it had something to do with my BCIR (formerly total ileostomy). Now I am beginning to wonder about it all after reading some of the information Peter has found. I do believe that having a parasite would do the same thing.
KUDO'S to you Peter, for offering yourself up as a guinea pig. I couldn't do it right now. Maybe some day.
Anita
Hi there. I am so glad to find this site. I was diagnosed last year. I too have a high WBC, am anemic, have low vitamin d and had a negative bone marrow biopsy. I've been tested for almost every autoimmune with no answers. With fgn being so rare it's nice to find others going through this.
Hello everyone after reading through all of your post I feel as if I know you all! I was just diagnosed with FGN yesterday after years of not knowing what was wrong and doctors just saying it was my diabetes that was causing all these side effects... low vitamin D, swelling of my feet and legs, low chronic back ache, muscle spasms, always tired, very forgetful lots of others that I'm sure I'm forgetting :) About a year ago I was told I would have to be on dialysis and need transplant in about 2 years now I'm being told I'm a couple months away from dialysis, my kidney function is now at 10%. I’m 56 and live in Missouri. Thanks to all of you who have taken time to blog your thoughts are appreciated. I am on facebook http://www.facebook.com/profile.php?id=1849463959 if you would like more info about what I have found.
***Welcome Donna and Steph. Donna, I did a friend request on facebook.
I wonder if there is just some gene or something that makes us have a high WBC, and in turn makes our body "think" we are fighting something and kicking us into FGN?
My appt. is next Wed. and of course, I have lost my lab report from my PCP. Will have to call today and see about getting another one. Now we are worried that low D will hinder my recovery for my surgery on my neck/protruding discs. Oh well. Sometimes you just gotta laugh to keep from being severely depressed.
Hope you all have a wonderful Memorial Day.
Just dropped in to say hi.Hope everyone is doing ok.
Peter
Hope everyone is feeling good! I went to the Hep C Doc last week,I have a sustained viral response, cured of hepc. My creatine is now 1.7 again it had dropped during hep c treatment, I go back to kidney specialist in Aug. Now is the time I will be able to really tell if the hepc caused the FG, since Im cured of hepc my creatine should not go up if in fact they were associated ( doc says they werent). I was curious to know if when you were diagnosed, what other diseases were you tested for? Also what meds are you currently taking?
I feel great except I have lower leg pain not sure what that is!
Take Care! I think of you all often.
Helen
my sister was told today that she has fibrillary glomerulonephritis , which really scared me and my sister (since were both nurses). So my sister called her neph. and he told her not to worry that she did not have the progressive fibrillary glomerulonephritis and that they coud treat it with meds and he did not think it would progress. He said there were two types one is progressive and one is not. He also told her that it was hereditary and my mom and myself needed to be checked. My sister has protein in her urine and high blood pressure , high cholesterol and low vitamin d. Has anyone else heard of the different types of this or do u think he is just not telling her the truth. I worry about my sister and myself because i have some of the same problems (just dont have protein in my urine) but i have the other symptoms.
Hi Tami,
I'm no expert but I have read anything I can on this disease and I've never seen anything about (two) types. However it does appear that the progression is diffrent for everyone. I have all of the symptoms your sister has and blood in my urine. My Neph has never mentioned heredity and I have never read anything conclusive on that.
As I said I'm no expert but since you have questions I would suggest a second opinion. If you read through the posts not much is known about this disease.
Try not to worry too much,
Helen
Hi all
Tami
I was most curious to read what you said about the two types of FGN. Like all of us here, we have looked for answers and run into walls. I have high BP, everything else appears ok, yet I have know I have had this for 7 years. This is the first time I have heard that a neph has stated that there are two types, as I could never understand why I get along ok, yet others suffer. I would love to know if the second type the neph referred to has a name. My email is peter.walters@fi-logic.com, if you ever want to chat.
Peter
PS. Hope everyone else is doing ok
I was wondering if anybody was out there. Tami - My neph said it wasn't hereditary and never said there were two types. He's from the Mayo Clinic so I would like to know more info. I have all the symptoms your sister did, and am on two meds for hypertension and high cholesterol, and 50,000 units of Vit D for another 7 weeks and then will have labs to see where my D level is at. Hang in there to you and your sister - I was diagnosed by a biopsy, which I'm told is the only way to diagnose this, and have been fairly stable for 2 years now.
I have never heard that there are two types of FGN. But it would make sense to me. I have an internet friend who has the disease and is now on dialysis and the transplant list. I'm doing just fine on my meds. I was told that it was not hereditary.
@Tami-what meds are your sister on? I'm on Cellcept.
Hope all is well!
Trish
trishyo@gmaill.com
My sisters nephrogist told her that, she does have lupus and that her kidneys are not having problems functioning , and her bun 7 creatine are good , he has put her mobic to try and slow down her kidneys from filtering so much and he is hoping this will work to slow them down. She is allergic to most medications , they have started her on a couple of bp meds . they said if this dont work then she will have to go to endocrinolgist. he said that FGN is not heredity that lupus is and that is her underlying condition that caused the FGN and that is what me and my mom needs to be tested for. he is still telling her that he doesnt think her kidneys are going to progress to the point that she would need dialysis or transplant. So i dont know what to believe , all i can do is pray for my sister and everyone that has this disease , pray for a treatment and or cure. God Bless everyone . P.S. i am so glad that i found this site.
Thank you for creating this hub. I find the posts about fluoride very interesting since I had a well that I drank from for 14 years that contained 100 times the maximum allowed amount of fluoride. Now diagnosed with FGN and finding this site maybe all of us together can find the vector.
Wow, I've missed a lot of chatter. Welcome to all the newbies. So much interesting information. I'm in the "slow progression" category. I show slight to none in the protein area, but my BP is pretty wacky. Also, my hematura count has grown consistantly, meaning my kidneys are bleeding out a little. My sister the LPN tells me that keeping our blood pressure under control is the secret. But I'm thinking most of us have been told our high BP is what causes kidney damage, AND that bad kidneys cause high BP. LOL
I know that I carried my BP for YEARS (even at times of being overweight) at around 110/60. Was told it was excellent. Then about a year after the FGN diagnosis it began to climb. I was tested for EVERY disease known to cause FGN and have none. I'm beginning to believe that having had a complete colectomy (Ileostomy) done at the age of 17 was the beginning of my true problems. The body has less of a waste system after that, and I think things just back up and hide in the remainder of my small intestine.
I think there are hundreds of reasons people get FGN. I also think the flouride, pesticides, and the Lupus play a big role in it all. I really wish Dr. Rovin would put me in some kind of study, and next time I see him I'm going to beg. I want to know what's next, before either of my daughters or grand babies have to deal with it too.
God bless- Anita
Hi All
Yes, I've been slack. I've been off having a life and trying to forget about FGN. Can anyone blame me?? Tami, I can say this. I don't have lupus as I have been tested for it. I have now known I have this for 7 years, but nothing changes. My blood tests don't change, my BP will get out of control if I don't take the meds, but I live a good life. My wife has had Hep C from a blood transfusion in the early 1990's, but I don't have it. We belong to a small group that the medico's either do not understand, or there is no financal gain, in chasing this problem up!! I intend living my life as best I can, while I can. And I intend doing that for a long time. I have no intention of worrying about this any longer. If any of you feel I have the wrong attitude, then please tell me !!
Peter
that hit the nail on the head Peter. It is a numbers game and we are not big enough to matter, sad but true.
Hello Everyone:
My husband was just diagnosed with FGN today, it was found through a kidney biopsy. He has high blood pressure, protein in the urine, vitamin D deficiency, high cholesterol and had swelling of the feet and hands. His blood pressure is now under control with lisinopril, he is on simvastatin for cholesterol, lasix for water retention and vitamin D3 supplements. They want him to go to his hematologist and have a bone marrow biopsy. He has also had autoimmune hemolytic anemia for 7 years now. He was on pregnisone for the hemolytic anemia until recently and the nephrologist has said that, the pregnisone masked the disease but now that he is off of it the disease has come into light. We have no idea how long he has had FGN but the nephrologist is pretty certain he has probably had it for awhile. His blood pressure was always perfect until last year when he got an infection in his leg and had to be hospitalized. The Nephrologist is going to speak to some of his medical collegues at Jackson Memorial Hospital as he is not familiar with this disease. I am very scared and have been starting to do research but all I have been coming accross is websites on case histories not much else so far. My husband has been working in lawn service since he is 15 and is currently 44. I have often wondered if the exposure to gasoline had anything to do with his hemolytic anemia as they have never found a cause for that. He recently went through a course of rituxam, spelling is probably off, therapy and is getting shots of Procrit for his hemolytic anemia because he was on pregnisone for 7 years and the new hematologist wanted him off the drug and found an alternate treatment. I think I am still in shock over the diagnosis and I am trying to find out any information I can about FGN. I am very sorry to hear that so many of you are suffering from this disease. I am praying for every one of you. Thank you for starting this site as it has put me a little more at ease but not much. I am very scared for my husband and I pray that the doctors will help to prolong this disease without needing dialysis. We own our lawn service and have 3 children. Thank you again for posting this site.
Hi all,
I have never posted to any site like this before, and I really appreciate all the info everyone has to share—it is great to know I’m not alone with this weird disease. I was diagnosed with stage IV kidney failure over a year ago, but only found out it was FGN in April. My nephrologist told me before the biopsy that she thought she knew what they would find, mainly because I have had Hep C since I was 10 (I had surgery and transfusions when I was a kid-- but my viral load has been undetectable for years). I also have a relatively rare auto-immune disorder (Reynaud’s).
My kidneys are working at about 10% and my creatinine is holding steady at ~2.4 –my Dr. said she thinks I have about a year before I will need dialysis. I didn’t think peritoneal dialysis was a choice, but thanks to you all, now I do—I will ask my doc for her input. She is a beautiful, smart, young woman—I am lucky as I really feel that she has my best interests at heart and cares how things work out. When I had my biopsy we knew it was going to be difficult as I have other medical problems and must take blood thinner medications (Coumadin & Aspirin). Because of this I was in the hospital for 5 weeks after the biopsy.
I have been anemic off and on for years and we always put it down to my mechanical heart valves chewing up the RBCs, or blood seeping out of my intestines or such. Now my doctors and I wonder if it might have been at least partly due to growing kidney failure—so I don’t know when my kidneys started to fail. I have needed transfusions 2-4 times a year for 7-10 years—this also means I have weird antibodies in my blood from the transfusions—it will make it harder to get a good tissue match (I have no blood relatives). I have an appointment at USC University Hospital on Tuesday for my first transplant evaluation. I have to admit, I am a bit nervous. I will let you know what I find out.
Thanks,
Sally
Hi
I was given vitamin D supplement 4 weeks ago by my neph and will be going to see my primary doc tuesday. I have noticed alot of pain and stiffness started in my feet and is moving up currenyly hips legs and hands. Hopefully the Vitamin d will help.
Daphne I know your scared and so am I One day at a time!
is all you can do.
Sally my thoughts will be with you this week. While i do try to not dwell on the disease. It is always in my thoughts since every couple weeks another issue pops up. Currently I will be tested for my parathyroid PTH apparently thats all messed up.it seems like for some it is a downward spiral while others hold steady for years and maybe even for ever, we dont know since we dont have enough research. Please let us know how your week goes.
Stay Strong
Helen
Thanks for your postings. I am a 65 y.o. pharmacist (retired) and recently diagnosed with FGN. Rec'd blood 1983 and found out 10 years later that I had Hep C. Took 3 x 6mo tmt of IFN + Rib. but failed to eradicate Hep C. (s/e NOT GOOD). Nephrologist says Hep C antibody complexes have caused FGN. No Tmt plan yet. Future uncertain.
Jeff
They have a new Hep C treatment not sure of the name but I have read that many trials are going on and several poeple who have not responded to ifn & Riba have responded to the new treatment. Keep trying!!!!
Stay Strong
Hi All,
Well, we went to the transplant evaluation, saw a nephrologist, surgeon, social worker, financial planner and transplant specialist. The docs don't think I am a good candidate for transplant. It’s weird, you can agree to take a less than perfect kidney (I jokingly call them Class A, B & C kidneys). Class A is a good kidney from a young cadaveric (dead) donor with no diseases that might have harmed the kidney, or from a live donor, B for a cadaveric kidney from someone older (50-60+), or who maybe had diabetes or other medical problem that might affect the kidney, and C for a cadaveric kidney from someone who perhaps was in prison, engaged in high-risk sex or drug use etc. I am 64 now, and the wait in Los Angeles is about 10 yrs for a Class A kidney, 6 yrs for Class B, and 4 for Class C—of course always taking into consideration if they can find you a match.
Because I have other medical problems now, they are concerned that by the time they find a kidney, I would have more—age does that to us all :) . The surgeon said that those younger than 50, tend to live longer with a transplant vs dialysis, but that is not so if you are older than 50—then it doesn’t seem to matter. The transplant center I went to also said count on $1,500+ /month for the cost of medication for the rest of your life. The main reason the surgeon felt I was not a “good candidate” was I might have the transplant and end up in a nursing home due to complications. I spent a week in a nursing home, and I WILL NOT do that again!
You also have to have a person to sign up to care for you 24/7 for 2 months after the transplant, another to drive you to clinic appointments, etc. My husband is also disabled—he was too ill to go with me to the evaluation--he can cook, run errands inside the apt. complex etc, but cannot drive or really be in charge of the many medications and the timing taking them. Now I take care of him in these things. I do have friends (we have no other family) but 24/7 for 2 months is a REALLY big favor! So, I will talk to my husband, doctors, friends, and think and pray for wisdom to make the best choices.
Sally
Hello
Went to my primary Doc for my yearly check-up(Which I would blow off before diagnosis) My Cholesterol is very high and he started me on new meds for that. My creatine was 1.6 down from my neph visit a few weeks ago. I hate going to these doctors all the time and everytime it's a new problem associated with kidney disease. I just shrug it off and take my new meds as directed.
Sally I will say a prayer for you!
My neighbor has lupus and one of the meds they gave her caused kidney failure. She was recieving dialysis 3x a week she found a kidney med (holistic) on the internet and is now down to 1x a week on dialysis. I think I'll look into that. Of course her neph frowned on this new treatment but she did it anyway and her levels all improved now he just tells her to keep doing whatever she's doing.
Stay Strong
Helen
Hi all,I'm so pleased we found this site my husband Bob has GFN for over a year now. He has had kindey byopsi, bone marrow byop, exray's, cat scan, Pet scan. Blood tests etc etc and is on meds for BP and cholestrol ( please excuse my spelling its awful )and recently been tested for VMA Metanephrines, were not sure what this is, does anybody what this means? We really though we were on our own, thank you so much for sharing your stories it is comforting to know that there are people out there who understand what its like to live with this. Bob really suffers with tireness, mussel and join aches. hot flushes and he could sleep 24hrs some days. Also swelling of his joints and aches and pains. We are due to go back to our specialist next month to discuss possible more chemo treatment. Having dinner now steak and KIDNEY pie LOL so will log on later. Wishing you all well. B&M
Wow Peter! Way to go. I'm in the same position. I am unchanging. I hope that fact gives hope to many.
As long as I take my Metoprolil 2X a day as told, I do pretty well, other than these massive headaches/migraines. My hematura levels are up a little, but not enough to cause me any problems. You are doing the right thing. So far as we all know, there isn't much known about this disease yet, so I imagine a lot of us will be in some Doctor's case study some day.
Keep up the good attitude.
Anita
Daphne- you brought up a subject we have seen as common in past conversations, unintentionally. That would be pesticides and such. Since your husband has a lawn care business, I really feel this should be in the few studies we have going on with this disease right now. Good luck to you and yours and thanks for joining in and giving us your story too.
Anita
Oh Sally- If we have to, we will start up a web site to FIND you a tissue match. Whatever it takes, we are all in the same boat here. Now the wheels in my head are spinning. I begin classes to become certified in Phlebotomy very soon and I will be learning a lot about body fluids, matching and such. Once I know what I am doing, maybe we'll get something going. You are a brave lady. Keep it up.
Anita
Helen you're an angel. Some of you stay here and support one another even when I am gone off stir crazy busy. And I really appreciate it. I have the same pain from my feet up, all the way into my hips. There isn't much swelling of the joints, mainly like no "cushion" at all. Every move I make is like bone on bone. I truly believe it all comes together under this big umbrella of mysterious side effects.
Anita
Jeff you hang in there. They are always coming up with something new in trtm. for Hep C. Don't get hopeless and think your future is uncertain. We are all still here and supporting one another. Each of us finds out something new every time we go in for a check up because we are loaded with an arsenal of questions from knowledge gained from one another. Keep some notes. Ask questions, demand they find an answer, or move on to a different specialist.
Anyone in Ohio, OSU Nephrologist Dr. Rovin is fantastic.
Anita
Sally- your church and local college or high school is a great place to start when thinking about the care you will be needing. There are some nursing students who have groups that would love to have the experience they would gain by caring for you. Start at your church, have a good talk with the pastor. Do it now so you aren't panicked right before. The stress would hold up your surgery. Think positive honey. There really are people out there who truly care. In my mind, over and over, one phrase; "believe and receive!
Margeurite- check out this web site. I'm really glad you shared this.
http://www.labtestsonline.org/understanding/analyt
So glad I got to stop in. Learning more and more every day. Strange how they have not been finding any real reasons for all of my headaches. Now I have somewhere to look on that.
I hope you all continue to stay blessed with one another and me with you. I'll try to stop in more often than I have been. ]
My new grandbaby is going to be getting a baby brother or sister in March.
Boy, when you get grandkids, you really get them. LOL
They keep me going though, even when they wear nanna out, those little smiles change my whole day.
Bless you all, and stay in touch.
Anita
Hi All,
Helen, please let me know what you find out about the holistic meds. When I talked about my situation amongst some friends and acquaintances, one of them said he had had GN (he didn’t say FGN) a few years ago due to an immune reaction to some infection. He was told that in a few months he would be on dialysis. He saw a nephrologist who put him on 6 months of chemotherapy and now has no kidney problems. I am going to see if my HMO will let me see him for a second opinion.
I have been taking Vit D for a couple of years—never had my levels checked, I just read that most older people have very low Vit D titers and perhaps this was involved in older people getting more infections and bone loss. My cardiologist who is really up on ALL the papers written (it seems like it anyway) said that yes, many older people have low Vit D, but the way scientists figure out what levels people should have is just by finding the average levels in many people. No one knows if the “average” is what is best or if low Vit D really is responsible for increased infections or bone density problems. I am a biologist and I know it is frequently really hard to figure out if one thing causes another, or if they are both the result of some other thing, or they just happen to occur together by coincidence.
Thanks for the suggestion about church and nursing students. I have a group of friends that have offered to help out if I do decide to push for the transplant—this week however, my husband is in the hospital so I have pretty much put my problems on hold for a while.
Anita- Good luck with your phlebotomy. One of my neighbors here in L.A. has her certificate, but is having a really hard time finding a job—seems like everyplace wants a year experience. She took a cake with “Have Blood?” “I’ll take it!” on the frosting and it got her an interview! Guess you really have to be inventive to stand out from the crowd nowdays.
Thanks for being there
Sally
I was diagnosed with fibrillary GN on July 21 of this year. My microalbumin/creatinine ratio was 7646.3, the normal range is 1.3-30.0. My Nephrologist says that this is a rare disease,which means that less than 120,000 people have it,and they don't know much about it.On Sept 9th I started I V infusions with the drug Rituxin, this needs to be done every 6 months. I am constantly tired,fatigued and swell often, I am hoping that these treatments will help.Reading all the other stories makes me feel not so alone anymore,there's someone else that can relate.
I'm moving "up the food chain" of MD's. Have an appt. with a hepatologist (liver disease) in Atlanta this month. My neph. set it up - says attacking the Hep C should help the FGN and says hepatologist in Atlanta will be willing to use other anti-virals (from AIDS research) to suppress viral loads, thus slowing progress of FGN which is the immediate and crushing problem.
So, in fact, a plan has been set in motion, and I'm comforted by this site. I felt so isolated, initially.
I am so touched by you all being here for each other and giving one another a way to speak out and also learn more. Writing about all of this has helped more than any of you know. Please stay in touch and keep us up to date on anything new you learn. I wish us all the best of luck in finding a cure or treatment for this. My days get harder and harder, and I'm not here as often as I would like, but I'd rather spread joy and understanding than depression. lol
You are all the greatest.
Anita
Hope everyone's had a good week! Mine was great no Dr.s :)
Jeff I'm glad you are looking to treat again, what type are you I was a 3 and am currntly 6mths SVR.I feel alot better after my treatment although it was hell. I have my fingers crossed for you!
I have read about the Rituxin treatment for FGN my Dr never suggested it, Please let us know how you do.
I check in here weekly and I'm always surprised someone new has stopped by. It is nice to be able to read about all of your experiances with this disease. I too feel isolated at times but mostly I take my meds and try to push threw.
I have a few blood test coming up but overall I feel good.
Helen,
My Hep C is genotyoe 1b. Type 1(a&b) are more difficult to achieve SVR. Genotype 3 seems to have higher rate of SVR with Tx than onter genotypes. Right now, my goal is to suppress viral titres (load) which, I'm told, will help delay progression of FGN. Yes, Ifn+RBV are a "nasty"
combo (I've completed 3 x 6mo. Tx regimes in times past and never achieved SVR. But the goal now seems to be lower viral load, thus lowering immune complexes, thus slowing FGN. The FGN is the "target"; make no mistake about it. But the road to that is through Hep C Tx. I'll post again after I've seen the hepatologist next week. Thanks, again, to all for your post on this site. In all my years as a clinical pharmacist, I've never even heard of FGN, so any information 'yall glean, please share, and I'll do likewise.
Hey guys & gals!!
Well, went for my labs and 24 hr. urine prior to my quarterly dr.'s appointment. I don't know how it happened, but my protein is within normal limits at 32!!!! I guess normal is 0-300. Not to be pessimestic, but I think the results were probably wrong, but will know more when I have my next labs done in November. If the results are still normal, the only thing I can attribute it to is finding out I was Vit. D deficient, and taking 50,000 units of Vit. D once a week for 4 months. My nephrologist was going to let my nephrologist at Mayo know about the results and see what he thought. I keep all of you in my thoughts and pray someday, somewhere, someone will find a cure for this!
Spoke to soon and was in the DR. office today for severe flank pain and pink urine. Kidney stones? It appears that I may have a hyperparathyroid and that inbalance can cause kidney stones.I was given 65,000 units of vitamin D weekly about 2 months ago and I'm still taking it. It appears too much vitamin D can cause stones too. Talk about pain, thank goodness for pain meds.
My dad (51 yrs old) was recently diagnosed with FGN. He has always had high bp for the last 10 or 15 years. His GFR rate is 22 (very low) and his doc states he will need dialysis in a year or so. He was diagnosed in June of 09. He has also had trouble with anemia which is stable at this point and elevation of PTH (parathyroid hormone) due to his decrease in calcium. Parathyroid gland controls your calcium and phosphorus level so when calcium level drops your body triggers PT gland to secrete hormone. Which is all related to Vit D too.
His labs (not sure about cholesterol right now) are normal except for creatine (very high) 3.4, BUN 34, and his RBC's low. Interesting his wbc is nl except for his basophil count are always high? His PTH (parathyroid gland hormone) is also high secondary to FGN. He takes calitrol for that and PTH was last 298 with nl~ calcium level of 8.7.
HE was also diagnosed with HEP C which is having that checked out this week. Rumor is.. it is in remission but we will find out when he sees hepat doc. He had a blood transfusion for back sx back in 1982 or 1983 and they think he got it from that.
He has a long history of analgesic use for chronic back and neck pain from previous accident... not sure if anyone else does... Maybe a factor in progressing his disease. Also read previous posts about flouride and has always been used where I live in our drinking water. Studies have shown it to be cause of renal failure and thyroid damage. Not sure about pestisides...he is not a farmer nor lawn care but I dont know what all he as really been exposed to over the years.
I am really worried about him and plan on checking to see if my kidney is a match in the near future. Worried what they say is going on with liver because of hep c.
Apparently there may be some correlation with immunoglobin IgG and C3.... I did not see any test where he was tested specifically for immunoglobins (antibodies)nor did I see anyone else mention it. But the immunoglobin I will research further and get back with ya'll. I believe it is some sort of autoimmune disease in which there are to many antibodies in the system or autoantibodies that attack and deposit in the glomeruli of the kindey causing basically them to become sclerotic or scar... causing deficiency in filtering the blood...
I am interesting in natural things that could help keep his bp under control and anything anyone else that may have found that may work in any way. I hope everyone is doing ok and you are all in my prayers. I am really worried bout my dad and will get back with ya'll.
Im really worried about my dad and Im researching this the best that I know.
Oh and one more interesting thing.. he has not had a cold in a longgggggggg time??? AS a matter of fact I do not remember him in several years ever being sick?? Something to think about.
If anyone would like to chat my email is jciano1217@yahoo.com I would love to hear about everyone's story..... Im really trying to research this as much as a I can on my spare time. I have some good basic knowledge in the medical field which makes it a little easier for me to understand... Please email me if you get the time!!! And if anyone has found a research hospital or someone that specializes specifically in this disease please also let me know!!
Thanks so much and good luck to everyone!!!!
Wow - I am sincerely grateful to find this site, thank you all for being here, I feel so much better after reading your posts, I have absorbed some of your strength. I was diagnosed with FG this week. Here is my story so far:
It started with high cholesterol back in May, which medication has brought down (lovastatin). An annual physical in July revealed an issue with kidney function (39), high blood pressure and elevated white blood cell count. I was going to a clinic at the time due to lack of health insurance (disability case - extreme stress, anxiety, depression). Still, even with thos things I've never had these issues before (blood pressure, etc). The clinic doctor recommended a follow up in three months. My temporary disability payments started after a year and a half around then, and I was able to get some sort of health insurance back, so I decided not to wait and see someone else. I guess I'm glad I did, sort of. I got a better doctor who referred me to a nephrologist upon confirming the kidney results (still 39). She also found a vitamin D deficiency and I am now taking a vitamin D supplement. The nephrologist did further bloodwork and found high levels of protein (4g)and blood in my urine and high levels of calcium. He recommended a biopsy. Now that it's Oct., the whole thing still took about 3 months, but after reading here I guess I should be grateful.
The biopsy determined that I had FG, and I was given the news 5 days ago. Since then, I have been trying to absorb and understand what I need to do. Here is what I have learned so far -
I have continuously heard that blood pressure control is important. Right now we are trying micardis - supposed to help filter the protein as well as bp - bp is still a little high, around 140/95 average. Giving it another week or so.
My nephrologist explained 3 "experimental" treatments available and told me he thought it would be about 2 years before I needed dialysis. He didn't think very highly of steroids or chemo, but he favored trying rituximab injections. After looking at the side effects of this drug, I am not keen about it and would almost rather just let myself progess as it will. Anyways, with last week's test my kidney function dropped to 33- we are hoping that was a fluke. My potassium level also rose.
In the meantime, he referred me to a hematologist for a possible bone marrow test. After preliminary bloodwork, she didn't think I needed the bone marrow test, we are waiting for the final bloodwork to come in to be sure and a re-test on my kidney function to see if it is still dropping. I have an appointment to follow up on this on October 19th.
I have many factors in common with some of the things I've read here, and some differences. In my history, I have been diagnosed with or dealt with: alcoholism, post traumatic stress disorder, anemia, epstein barr, hep c (dormant for many years).
In the meantime, I have cut out coffee (cafeeine may raise blood pressure), am working on quitting smoking (got the e-cigarette with pretty good results so far, need a regular cigarette occasionally), have been instructed to eat a low salt diet (less than 2000 mg/day) and to stay hydrated (drinking lots of water).
I am also NOT eating potatoes, tomatoes, bananas or oranges right now so as not to further raise the potassium.
I was told to avoid protein from animal meat, so red meat is out for now and I read all the labels on anything I buy and avoid high protein, salt, calcium or potassium.
I am trying not to eat any foods that are processed at all. If you see it on tv or it comes in a box, or is frozen (except fruits and vegetables), I avoid it.
I use sea salt if I need salt.
Thanks for the star fruit recommendation, never had it. I am also filtering my water.
In place of coffee I have substituted teas - am experimenting but I went to Chinatown and spent some time and asked for teas with little or no caffeine that were calming and had good properties for health, and have been drinking chrysanthemum flower tea and gong ting pu-er tea. I seem to feel better when I drink them.
To keep myself from getting sick of them, I am also drinking organic, loose green teas and am trying others.
I am drinking cranberry juice besides water, and am eating fruits, vegetables, rices, seafood, chicken and pork for now. Whew- what a week.
As for recent symptoms, i have what I thought were weird ones that my doctors did not understand until I read the posts on here.
I have had a low level burning ache mostly on my right side under my rib cage and sometimes towards my back.
I go from a hot flash (had a hysterectomy in 2005)which is not new, from feeling cold, esp hands and feet, which is new.
I have had the weirdest tastes in my mouth. This is recent.
I have had some blurry vision (the scariest thing to me)
As I am falling asleep, I have had a lightning bolt shooting pain through the center of my body, and more recently, the other night just as I was falling asleep I felt like there was champaigne shooting through me blood, which kept me up all night, but only happened right as I tried to fall back asleep. Then it stopped the next night.
This is all freaky and I am seeing an acupuncturist, who I know does help with relaxation (I was seeing one before the diagnosis), removing toxins and increasing my energy levels.
My appetite has been poor for a long time, I always thought it was stress, though I have been overweight. I lost 10 pounds in the last month just as I was trying to make myself eat more regularly, could just be a result of increasing my metabolism. I had just been through a year and a half of extreme stress, anxiety and depresssion and was working through that when this happened.
I read something about this PCR Lab test in an earlier post, and will mention this to my doctor as I took a prescription antacid to counter a bad (nausea/reflux) reaction to the first cholesterol med I was on (can't remember the name at the moment).
I have joined the facebook page and will post any new info I come across. My email is robinf8717@gmail.com and I am happy to correspond with anyone re: this disease. I have one grown son, no siblings, one live parent and have been isolated for a while, and I couldn't believe the rare nature of this disease and lack of support when I first heard about it. This is one time I am glad for the internet.
I am the only patient my nephrologist has ever had with FG and the second one is the ten year practice here in Washington state. Still, I feel more confident about my doctor now than I did at first as he seems to have bothered to find out about available treatments and so on. I am meeting with a second nephrologist next week just to see if I can get any more information, although I am beginning to think at this juncture I've got all there is.
Thanks again for sharing your words of encouragement and support, I don't feel so alone now....
Hello All.
I was diagnosed in 1/1999. was predicted to be on dialysis within 2 years! Had just gotten married and was told i couldnt/shouldnt have a baby due to the stress it would put on my kidneys. Well, i had a baby which is 9 years old and have faired quite well. Today however is a different story...my creatnine is currently 6.0, my blood pressure is hard to control and i was told today by my neph that it is time to begin dialysis. I must admit that i broke down and sobbed uncontrollably for about 20 minutes. I have always been extremely fearful of this point. I am afraid, confused, and oissed off. Any suggestions/advice on what is to come. I am a 38 y/o mom who wants to be around!!!
Hi Kruthe - I was diagnosed just over a month ago, and was initially told 2 years too. I found a website helpful for dialysis info, called ihatedialysis.com. The people there are extremely supportive and most are on dialysis and can answer questions about it. Best of luck to you.
Hi All
Sorry Anita, I've been busy and did not have time to post as promised. I am still scratching my head from my last bloodwork. Like yourselves, I have been looking for answers and not finding any, just waiting until the day came when they put me on dialysis. After seven years of knowing that I have this, my last tests came back within normal limits and my BP is under control.This is raising a lot of questions for me. There are two changes I have made in medications. I starting taking Micardis ( Telmisartan) six months ago as my nepth felt it would lower protien levels, which is what has happened. The other change is that I suffer hay fever and for years I have used different steroids to relieve the condition. I stopped using the steroids 12 months ago. I have asked my nepth again if there is any evidence that there is a progressive and non progressive strain of FGN, the answer is the same, they don't know. Like many of yourselves, when I had my biopsy, they said I'd be on dialysis in 2 years. I am now starting to wonder if they stuffed this up and I have something similar, that shows up as FGN, but isn't?? How many of you have had a second biopsy with exactly the same result?? I have considered asking them to do it again, but I think you can all understand my equal reservations.In saying all this, who knows, my next appointment with my neph is in April and I could be back where I started.
I worry about the day the Neph says it's time to start dialysis as well. It scares the hell outta me. My Doctor told me out right that my FGN was progressive and I had two to three years. I have started to notice swelling that comes and goes this is new to me as I had several other symptoms. Most information I read says median age is 50's however Im 47 kruthe is 38 and was diagnosed around 29 and is now going on dialysis. I think pathologist can only give results of the biopsy to what they know I have questioned several Docs about interpetation of my results could be wrong they say no.It has something to do with the size and shape of the fibrils. There appears to be some differnce in the congo red staining they do with the tissue but I'm not sure what that means. Could be the diffrence of progressive and non progressive I believe there are both kinds as some people have never progressed to dialysis.
Stay Strong!!
Wow everyone! We have been busy bee's.
Welcome to all the newbies and thank you so much for sharing your stories.
I have been going through some tough issues in my life lately and have neglected you all. I am very sorry for this. I have met an MD on youtube who has an online pathology class, very accredited, and am beginning the questioning. lol
If you look at some of his videos and listen to him explain things, you get a much better understanding of all this medical jargon, staining and such. Found him while trying to find some pictures of the spots on my legs and feet, trying to figure it out. The doctors don't seem too worried about it, but I HATE it, little red dots all over.
I am alone here most days now, so I am hoping to get back in the swing of things with research and writing.
When I possibly can, I will post a link to his videos on here. It won't show up as something new, you'll just have to look for it. Hubpages needs us to post links a certain way.
I know that I am inspired by each of you.
Talk to you soon.
Hello, everyone! I appreciate all of you for your strength and support of each other. I stayed up until 2:30 AM last night, reading voraciously. Since I found out five days ago, I have been unsure of how to react to the news that I have FGN. I began to suspect something last Spring, when my ankles suddenly began to swell. Because I attend clinics, it has taken until now to get the results of the biopsy I was told I needed then. I guess I was hoping for some magic pill that could fix the years of depression, fibromyalgia, arthritis, and low energy that I feel somewhat famous for around here. It is as though nobody trusts me to be responsible and reliable.
Your writings have shown me that many of you have faced this longer, researched greatly, and written for the rest of us. I am so glad, Anita, that you originally dug in and put your situation on the line. Last night, as I read about your experience, my eyes were opened wide. I did not know that this disease could be so consuming. You all have made me realize that I am not alone and that I have much to be watchful, and grateful for. Thanks!
Rae Cobbs
Wow Rae, thank you so much. This disease will drive you crazy if you let it. DON'T LET IT. There just is not enough known about it is all. It will take people like us demanding further research, and offering ourselves up for that, to find answers.
We have one of our friends going in for surgery this week. She will be having a catheter inserted, and she will be beginning dialysis. I will try to keep you all updated on her progress. She needs our support and prayers. She's having this done just before Christmas and hasn't much support at all at home. She is sole caregiver for 2 family members. If I lived closer I would help her, but all I can do right now is pray for strength for her.
Hope everyone has a blessed and wonderful Christmas.
With Love- Anita
I have been diagnosed with fgn..I have had 3 treatments of cytoxin and 120 mg of predisone every other day..I am a 4 time cancer survivor and just can't believe this..My creatine level is at 3.8 and i am anemic..Will start procrit next week..so good to see other people in the same boat as me..
Welcome Judi. You are DEFINITELY a survivor! There are a couple of us here now on Procrit. Not myself, but you will find support from those in the same boat. This gets me to wondering if all of the steroid injections over the years for my arthritis and such is what has kept my disease at bay??? The more I read from all of you about different treatments, and past treatments and illness' really makes me wonder. Another funny thing, which tells me I need to have some workups done, the other day I had to make one of my monthly trips to the ER for a migraine and dehydration, and when the nurse drew my blood, she asked me if I was on blood thinners??? My normally uncooperative veins spew for her. Every time I go in there I have asked them to please check my creatine levels, but that never happens. I wonder each time I get a horrible migraine if my disease has a hand in it. It perplexes me that with so much unknown about FGN, that they wouldn't take into consideration each persons constant symptoms, especially if there are several people with the same ones.
But we are not the experts here I guess. Keep us up to date if you don't mind. This is how we are all learning.
I WOULD LIKE TO WISH EACH AND EVERY ONE OF YOU THE MERRIEST OF CHRISTMAS'. I PRAY FOR SAFE TRAVELS AND GOOD HEALTH FOR EACH OF US AS WE SPEND THIS TIME WITH OUR LOVED ONES. I AM ALSO PRAYING THAT THE NEW YEAR BRINGS EACH OF US GOOD NEWS! LOVE YOU ALL~ Anita
creatine level at 4.5 now..had my last cytoxin infusion the other day..had my procrit shot too.will see doctor on the 14th of jan..don't know what else they can do now.getting muscle spasms all the time and i am so tired.
So sorry Judi. I know what you are going through with the muscle spasms and being so tired. I hope things get better for you soon. Keep us updated.
Happy New Year everyone!
I have been tentatively diagnosed (?) with this rare disease after a biopsy was done, my nephrologist have submitted to an oncologist to investigate or eliminate what is causing this, (Leukemia or Lymphoma, as he stated). My wife is, needless to say devastated, I feel a little worried but If it is God's way, so be it. Further test will need to be performed to get a final result.
Well - interesting developments. I have an MRI scheduled for tomorrow, among other things looking for amyloidosis, which evidently my nephrologist shared with my primary doc that I would be at greater risk of developing. It is extremely rare as is FGN. I still haven't developed any kind of swelling, but my last labs showed my protein at a higher level than it's been since being diagnosed 2 1/2 years ago. Still positive, but concerned about what is coming down the road. Everybody hang in there.
Larry- I have not yet heard a single thing stating that Leukemia or Lymphoma are involved in this disease. They evidently don't know enough about it. Mine is yet undetermined to have a cause, but most causes form from Hepatitis C, Lupus, HIV and such. Well, that is what most of us have been told so far. But it is still under heavy study so who knows. I would be very interested to know if either of the diseases you mentioned ARE your causes. That would give many of us a broader choice of causes. I know that sounds confusing. Prayers up for you and your wife. Put it in His hands.
Jeri- I have heard of this happening, but so far I'm thinking you are the first to be tested for this. As with Larry, I would really appreciate if you shared with us what they find out. And prayers out for you too.
Everyone be safe, warm, and healthy. Love you all.~ Anita
well I saw renal dr today he said for me to call surgeon to have a fistula put in my arm for dialysis,,not having to start yet but he wants me to be ready.anybody else have one ?
Well, MRI came back clean, no amyloidosis or temporal artery inflammation. Guess we'll just have to wait to see if there's another episode.
Judy- I don't have one, but one of my friends does. He also has home dialysis, which I think is much better than going to a clinic. I think he does it every night, for a shorter period, rather than the 4 hour stretches 3-4 times a week. You hang in there - we're all on this journey together, some of us are just further than others.
they say i can't have home dialysis because I am a caretaker for both of my parents.There is no one else in the house in case of an emergency.doctor thinks i would be better off getting out of the house..he thinks i need a break from them..
Judy - I took care of my mom too - while it was such a privilege, it was very stressful. It may be beneficial for you to be out of the house for a while. Just the pits that it's for dialysis...Hang in there -
Jeri is right, all we can do is support one another in this journey. I'm thinking there are so many others out there who we don't even know about that are even further than this. One of our girls was prepped through the stomach a couple weeks ago, and is on regular Procrit shots also for the anemia she developed. She had a little trouble the first week but is in good shape right now.
JERI this is very good news. The fewer problems the better, not that any of this is good anyhow, but you keep your chin up too!
Judy I think Jeri and your doctor are right. The less stress, the better your body will handle the dialysis when the time comes.
We all knew, but I'm sure hoped not, that these days would come. As we are faced with upcoming events, let us gather strength and knowledge from one another. That is what I created this page for, and we are blessed in one another. I know I am thankful to have each and every one of you in my life. I just wish I had more to tell you. But talking one here amongst ourselves is the best way to learn. Sharing any new news gives us hope.
Take care, stay safe and warm. Ohio is at a stand still in most areas. Maybe I'll find a muse to get my investigative skill juices flowing again since I'm snowed in.
I have been following all of your comments for some time. I am also a fellow sufferer of this confusing, difficult disease. I am fortunate to have a large family and one of my darling daughters has volunteered to give me a kidney. I've gone through all of the transplant investigation and am now on the list. I have been so lucky up to this point that I haven't had a lot of complaints other than keeping my blood pressure normal. I've probably had this for quite a while and am on Procrit now. It's very cold here in MN--I want Spring.
I was given the devastating diagnose 3 years ago. I found a doctor at Columbia Hospital in NY that is an expert in the field. He prescribed Rotuxin which my insurance company would not approve. I then went on Cellcept which has made a huge difference. I am in the process of reducing the dosage with the hope of going off of the medication. The blood work and urine test results are very positive. The doctor's name is Gerald Appell. He is an excellent resource for a second opion.
Helen I am right there with ya! Sounds like you and TC are doing great, well as well as can be expected.
TC- Is this medication holding things at bay or reversing the damage? I mean, if it can STOP the damage process that is great! Some are past that point and cannot get back to not needing a kidney transplant, but there some who still have decent kidney function that this would give great hope to.
Both of you keep in touch and keep us up to date on your progress. Thanks for joining us also!
Anita
Question for all of you . . . Can you guys & gals tell me what kind of symptoms you have? Not the swelling, but are there any other symptoms you have? Thanks in advance!
Whether or not the medication can reverse the damage is a question the doctor would like to answer. At this point we don't know.
Wow!
I haven't visited for a while. A lot of people posting. This stupid FGN! :)
I'm going to read everything I've missed!
I'm doing great. Still on my meds and FGN is under control! YAY>
love to all!
Trish
Trishyo@ymail.com
I think everyone's symptoms vary. I had no initial symptoms other than the hematura, but since have developed some we are trying to figure out (as to whether they pertain to the FGN). I am extremely exhausted, I have flank pain occasionally, and sometime so bad they thought I was maybe passing a kidney stone, but found none. I have constant headaches and limb weakness. My bladder is a mess too, not sure if that's related. I just know I don't feel good all around, and my FGN isn't progressing very fast at all. But from what I am seeing and hearing, it does that, then just gets really bad over a few mo. time, quickly. Some of our friends here and on Facebook have gotten pretty bad lately. One girl had her port put in to prepare for dialysis and has had nothing but trouble since. Been praying for her. Another girl on FB just had some surgery done also, not real clear on what exactly but do know it has something to do with her kidneys.
So glad so many are still doing well, and we need to keep the others in our thoughts and prayers please.
Anita
fistula is in .doctor says within 3 months i will be on dialysis/ creatine level is now 5,0 still feel fine just very tired so they are giving me shots of procrit
Hang in there Judy - we're all here for you...
My friend Rae who was diagnosed with FGN in December of last year has just been denied the treatment she had been waiting to start because she has no insurance. They had been stringing her along telling her she would start the treatment and they should have known she had no insurance (it wasn't like she was hiding it) and let her know months ago there were no treatment options, because now she feels like the rug is out from under her.
Does anybody have any ideas about alternative treatments? Money is very limited, travel is probably not an option (no vehicle to drive). She was going to have once-a-month infusions of Rituxin, that's what she can't get. At the moment, her kidneys are functioning great, but the protein level in the urine is higher than it was.
Best wishes to all of you. I can tell from observing Rae how confusing and sometimes frightening it is to be diagnosed with this.
Darn that gout! If anyone else has that issue is there anything that you have found successful? I'm on Allopurinol to try to prevent the frequent attacks, and then take Colchicine in massive dosages when it hits. When it is at the onset/severe stage, I can't even get up or down from any sitting position without excruciating pain. My insurance over the years has rented us a wheelchair but I've had to return them all. Hubby bought me a transporting one last week. He'd push me to the bathroom as needed but it still doesn't help the up and down. Oh well, so it goes.
In other happenings - I managed to spill boiling water on my stomach and left hand 4 weeks ago. Six days later I was in the hospital with a burn infection, for almost a week. I am also a diabetic. So besides the infection my sugar was high and my blood pressure was high. I did do one thing right, IMHO. I called my kidney doctor. I was at a hospital that he doesn't service. I was uncomfortable with random doctors dispensing so many drugs in me and worried about the effect of those drugs. He called in a buddy who works that hospital who paid me a visit. He checked my records and the good news was there was no increase in trouble.
Before the gout though came the flu (5th out of 6th to catch it in one week). Then a major cold. Sheesh, I'm tired of being sick.
Hope everyone else is doing okay.
Hi, guys, I love your site, not a lot of info out there for us with FGN, kind of like the treatment options. My problems began back last fall, I worked in a sometimes stressful job, had problems keeping my BP, cholesterol and triglycerides under control for over 5 years. I did retire after 33 years on my job when I turned 55 on Jan 1st. I also have a disc at C5 in my neck that was replaced two years prior that never fused 100%, that now it has arthritis in the joint. Then in Oct, while taking 5 BP meds daily, my BP soared and migraine headaches began. I ran in the 250-260 range over 115-120 for weeks before my new doctor could get it back under control. During my labs she noticed my kidney function numbers and recommended I see a Nephrologists. My Nephrologists, Dr Ludwig Cavaliere, is considered to be one of the best here in GA and is a professor at the Mercer University School of Medicine. He has me on 200 mg Cyclosporine daily since Dec 1st and bumped me up to 400 mg per day just yesterday. I began with 32% kidney function in November; it went as low as 20% and has made it back 26%. Like most in this group, I am experiencing a massive vitamin D loss; my doc began me on 50,000 per week for 8 weeks yesterday. I have had times that felt like pins in my face, arms, legs and feet. My stomach stays in a burning knot, my mouth dry as a desert, my tongue on fire and night sweats that come and go. I stay too tired to do most anything, except for naps. I also have aches in my joints and muscles from my neck to the end of my toes at times, at least the muscle cramps have been few in the past month or so. It appears that I am the only one in this group to be taking Cyclosporine. ???
Again thanks for this group, I haven’t felt like hanging it all out on Facebook, but with you guys, feel free to tell me to shut up if I get too much me, me, me…
Bill
I have this too. I've known what it was since April 2009 but no symptoms at all until the holidays. Started Procrit this month for anemia and just take vitamin d, valturna and one other bp drug. I was shocked to hear between October 2010 and January 2011 my creative jumped from 1.9 to 3.1 and my protein output from 4g to 8g per day. I had muscle spasms big time a couple of weeks ago but a doctor told me to take a calcium/magnesium/potassium supplement and they went away almost immediately. So at this point my only issues are fatigue and worry.
As a follow up to my prior comment, bllod tests were conductd to rule out any type of cancer, (lymphoma or leukemia) both were negative. After a visit to my nephologist with the good news, he recommnded me to the University of Miami Mller School of Medicine to seek a second opinion with Dr. Gabriel Contreras, Associate professor of Neprology and a leader in investigaitons of my disiease. He stated that surely my disease is rare, but he has seen atha in some patients, there maybe a chance to slow, not stop Creatinine levels in my urine with certain drugs and if I was willing to try them for a while and to see him in a few weeks to check on any progress anything else. He prescribed Cellcept as well as Cyclosporine Modified and Furosemide.
I'm on Cellcept and Diovan.
When I first started I was on cytoxan and predisone...lots of side effects! ....but, kidney's are working! I'll be on Cellcept forever....
Hope all is well!
Goodness. I love you all so much for being here for one another. I'm so glad I decided to write. If anything, it brought you all together for each other.
Never feel like you're saying too much Bill or anyone else. It's this information back and forth between one another that gives us all hope and support.
If any of you received any bad emails from my old email account, I am so sorry. My site here was hacked and I had a real mess.
I'm just glad it didn't shut down on anyone.
You don't have to do the FB thing. You can do whatever you wish to do. You can even start maybe writing a blog of your own and share your experiences.
I worry about each of us so much lately. I am seeing a big increase in people doing great, then having a sudden drop in health. But when it gets to that point at least I am seeing neph's jump in with panic and try anything and everything.
I am also currently without insurance, so I know what that is like. I am petrified that something will go wrong and I will be screwed too.
I would contact your local Kidney Foundation soon! Give them the doctor's name and any information you have (test results, diagnosis) and ask if there is any options.
Out of here for a few. So much to catch up on. Make sure if you do start blogging that you notify us all so we can support you too.
Have a good day my friends.
Anita
Where to start, with the last 8 months and my husbands FGN. After initially being diagnosed with FGN, the nephrologist suggested a bone marrow biopsy to look for multiple myeloma as a underlying cause. That biopsy came back negative. He has constantly been battling his hemoglobin level ever since diagnosis. He has been receiving Procrit shots every two weeks which up until yesterday was keeping his hemoglobin between a 9 and 10. The tried Rituxan therapy again for four weeks which actually lowered the creantine level but not by much, it kept the kidneys from gettting any worse for a little while. Two and a half weeks ago he had a fever of 102 for a day, and ever since then he has lost all of his energy and has been suffering major fatigue. Yesterday he went to his hematologist for a routine hemoglobin check. His hemoglobin fell to a 6.5 from a 10 the month prior. The doctor started him on 40mg of prednisone yesterday, he wanted to hospitalize him but he wouldnt go so against the hematologist better judgement, he sent him home. Last night at 1am he woke me to say he was having very severe lower back pain, it was lower then where the kidneys are. I took him to the emergency room at 4am. His potassium level came back very high, but after the procrit shot yesterday and the 40mg of prednisone, the hemoglobin was up to a 7.7 this morning. The bloodwork also showed his creatnine level to be at a 2.8 which has gone up from two months ago when it was a 1.9. Of course they have admitted him. The hematologist has him on high doses of prednisone, not sure how much as it is given to him in serum form now that he is in the hospital. The hematologist stated today that he is not sure if the hemoglobin dropped because his hemolytic anemia could be acting up again or if it is the kidneys. The nephrologist is not sure what is causing the lower back pain which went away during the day today but has come back tonight. I am sure more tests will follow tomorrow. If it is determined tomorrow that the fall in hemoglobin is due to his anemia, they will give him a blood transfusion, from what the hematologist said. I will keep all posted, if I have time to come back. My husband is only 45 years old and we have 3 girls, 17, 13 & 8, and we own a lawn service which right now has closed down. I am very worried as I do not know what the future is going to hold. All I can say to everyone is One Day At A Time! Take care everyone! I hope and pray for you all!
Hi everyone. I stumbled across anitariley65's article and contacted her by email. It's great to hear from others that have this disease. I was diagnosed Christmas 2010. I've battled the symptoms for years and the doctors just treated the symptom. After changing PCP's he decided to get to the bottom of the cause of the high blood pressure, gout, anemia, edema, etc. So we started eliminating things. I went to a urologist who ran me thru all the regular tests and a cystoscope. Nothing in the urinary tract. From there to a nephrologist who ran his tests, blood work, ultrasounds, etc then finally a kidney biopsy. That was the deciding factor and the lab in Little Rock even sent the speciman to Mayo to be sure of the diagnosis. It seems that there's not a lot we can do but sit and wait until the labs start showing your kidneys aren't working properly. From there he wanted me to go to De. Appel in New York but it was during January and his schedule was really booked and the weather wasn't co-operating. So we were able to get to St. Louis to the Washington Medical Center and saw Dr Donald Coyne. He gave me the same info my doctor here did. I'm having lab work done once a month, we are working on getting blood pressure down but I'm having trouble keeping potassium level on a even plane. I've always had low potassium but now it's running too high and I've been hospitalized for treatment to get it down quickly. So now we are just sitting and waiting and going to the doctor monthly.
Thanks for all the postings. It sure helps to know there are others with as many questions as I have.
I live in NW Arkansas, only 60 miles from Joplin, MO so I am very thankful that we have survived the bad weather and my problems don't seem as big as what others are facing.
We always have something to thank the good Lord for and I do it daily.
Is anyone on high cholesterol meds and if so what kind.
Thanks
I've not posted in some time, but I've been actively treating Hep C, to retard the progression of FGN. Have taken peg-IFN (and other antivirals)since Nov. '10. My Neph. says my Creatinine and BUN have stabilized after treating the underlying cause (in my case Hep C)This treatment regime hasn't been fun, but at least I'm keeping my kidney #'s in check for the time being.
Note to "Maconham": I'm glad to know the name of an expert Neph. in Macon. Right now, I'm traveling from just outside Valdosta, Ga. to Piedmont Hospital in Atlanta to a hepatologist, monthly to monitor the toxicities of Hep C treatments. But at least my Kidney #'s are not climbing.
And thanks to Anita and this site: "The devil you do know is LESS scary than the devil you don't know." and I'm less afraid now than this time last year....
Jeff
Well, one thing leads to another and not one doctor can explained why. My Creatine level has dropped instead of rising and that's great but now I have now been diasgnosed with Hepatitus B! Now that's scary! But we are watching both very carefully. But like the kidneys with the liver it's a wait and see.
This all sounds so familiar to me. I was diagnosed nearly six years ago. My protein urea was steadily climbing until I had gastric bypass surgery in 2009. Now my protein levels are around 600mg rather than the 7000 they were running and my creatine levels are around 0.6. My FGN is idiopathic but today was the first time I have has a positive ANA titer. I am concerned because all of the research I read see says that about 10 years total before end stage renal disease. I have not declined since 2009 but it is scary.
My case sounds very much like anita's.Two years ago my urologist told me that some people just have blood in there urine and NOT TO WORRY ABOUT IT. this was after a cystoscopy,now two years later my urine is full of protein and have been diagnosed with FGN.I live near Nashville TN and i am having a hard time finding any info on FGN. IM 57 years old.
I forgot to mention i have had trouble controlling my blood pressure for the last 11 months and my creatine level is 2.8. im now waiting to hear from my doctor.
Hey Randy - there is not much info on FGN unfortunately. I too went for years w/blood in my urine. It wasn't until 3 years ago I had a UA done w/tons of protein in it that my doctor referred me to my nephologist and my getting diagnosed. My blood pressure had, for all my life, been low, and then it started climbing. Unfortunately, that is a "side effect". Hang in there!
Hi All,
I was diagnosis with blood in my urine 11 yrs ago, protein in my urine 9 yrs ago and, FGN last yr. Presently I have stage III renal disease. The last 6 months my kidney figures have been going up and down. I get swelling in my feet when I don't drink enough water. I get cramps in my feet and legs that are relieved with magnesium. I'm on a low salt, low phosphorus diet. I very really drink alcohol. I'm now diabetic. My cholesterol is high, but I can't tolerate statins. If I use even one advil it effects my kidneys so badly if become horrifically tired (I fell asleep at my desk at work). I can always tell when my kidney functions are low- I get terribly tired. My blood pressure and pulse are elevated. The doctor had to change my meds because they made my kidneys take a dump. Now I'm on diovan, furosemide and bystolic. My blood pressure and pulse are finally under control, but my kidney functions went down. I guess we'll have to keep a watch on it. I have to see a cardiologist for my high pulse. The nephrologist wants to make sure my heart hasn't enlarged (eventhough I had a normal echocardiogram less than a yr ago). I also have glomerunephropathy. I have to check my urine annually to make sure there is no cancer. I've never been exposed to pesticides. I did have shingles. I saw that one person on here mentioned that. Did anyone else have shingles?
I just found this site. I am responding to TC (6 months ago).
I also have the same doctors at Columbia and was able to be treated with Rituximab (Rituxin). The way it works is that the B-cells attack the kidneys, causing FGN, and the Rituximab kills the B-cells.
I have been in "remission" since August 2009, meaning that instead of the creatinine continuing to rise rapidly, it has remained steady between 2.7 and 3.1. However, the doctors have stopped the Rituximab and we are taking a "wait and see" approach as to what happens next.
I would like to think of Rituximab as a miracle cure, but realistically what I hope for is for a little more time before the creatinine edges up again. In the meantime, Rituximab has given me a great deal of breathing room to get my ducks in order for a future transplant. This way, when the time comes, I will avoid delay and dialysis.
P.S. I am on Medicare and am very thankful that the costs of this treatment are covered.
Westcoastdeedee & jfarm1,
Welcome to our world!! I did have shingles a few years back, but I had blood before that, so I don't think it had anything to do w/FGN. I just got done with a 4 week course of Rituximab about 3 weeks ago and my protein level is trending downward. All of my other labs, for the most part have been in the "normal" range, it was just my protein that was going up. My nephrologist at home sends me to the Mayo Clinic about once a year, and I had heard about Rituximab on this site from Daphne, whose husband has FGN, so talked with my doctor at Mayo and decided to try it. Hopefully, it will put me in remission, or completely cure it! Wouldn't that be wonderful??? Hang in there and know if you need a word of encouragement, we're all here for you!! We do have a facebook group, and there are some awesome people on there as well.
So glad to see all the newbies. Not because you're sick, but because you found us! Now that I'm back up and running again, I hope to be able to keep up with everyone. Will see Dr. Rovin soon I hope and will see where all my levels are after over a yr without a check up. Have had 3 different attacks that were like passing kidney stones. Very, very tired all the time. My pulse also races and my blood pressure has been less controlled with my meds, even after having lost about 46 lbs. So I will be glad to see my nephrologist soon. Take care everyone and if you're not on our facebook, make sure to join us soon.
Anita
It appears that the common thread between all of us, besides FGN, is the constant tiredness. I was fortunate enough to have enough years to retire back in January when I turned 55. A mid afternoon nap has became necessity, even just 20 minutes and I’m am back recharged enough to carry on. Another issues is the chills, even during our hottest summer ever here in middle Georgia, I have chills every day. I thought I would freeze to death before last winter ended.
I am still on 200 mg each day of Cyclosporine and my GFR has remained steady in the mid 20’s for the past six months now. My Creatinine and BUN have remained double the highest max parameter. Another problem I have is with my Cholesterol at 374 and my Triglycerides at 1340, not good. Almost all meds to treat either has kicked me into Rhabdomyolysis with some real nasty muscle cramps.
I have been on Cholestyramine for two weeks now, so far so good with Rhabdomyolysis, constipation is the biggest side effect with this med.
Is anyone else in the group having this kind of blood problems?
I meet with the Transplant team from Augusta Ga tomorrow evening to setup my test and get a position on the list. I have to deal with my biggest addiction, besides food shortly, smoking, wish me luck.
Then I have a chemical stress test and heart echo scheduled in two weeks with my new Cardiologist. With my numbers, those test scare me almost as bad as FGN! It will be a miracle if I have no blockages.
Anita, to answer your weight question, I have gained about 20 lbs since this all began last Oct, I have never met a food I didn’t like.
As I mentioned above and before, my main treatment drug has been Cyclosporine all along, with its nasty side effects and all. It appears that Rituximab is the more common drug used by the group for treatment, I wonder which is better?
I have always believed in God and Jesus Christ, but FGN has pulled me closer. I pray that he will grant each one of us the power to overcome this disease.
I went to the cardiologist today. Luckily my heart is fine eventhough my pulse is still in the 90s. I go back to the nephrologist in October. I hope my kidney functions haven't gone down farther. I'm having my labs done next week. Does anyone know of a clinical trial for FGN? I asked my nephrologist, but he hasn't given me any information.
Great news, just received results of heart stress test on Tuesday from my Cardiologist office, “0” blockages!
Next stop transplant evaluation day in Augusta, in Oct.
sorry I havent written in awhile. Been very busy creatine level went to 6.5 and I am now on dialysis Next week i am meeting with social worker and transplant coordinator. Dialysis has not been easy they had a hard time getting needles into my fistula .Blood pressure dropped almost passed out and very bad leg cramps.I am still trying to take care of my mom and dad 86 and 88 but I dont think i will be able to be their caretaker much longer.
I got my lab results back- ugh. My glucose and cholesterol are through the roof. My Creatine/Albumin ratio, BUN and Creatinine have gone up again. My GFR went down again. I think it's from the bystolic. I'll have to wait until my appt with the nephrologist next month to see what's going on. Yuk!!!!
I have a question for Maconham and Judi. How long after you were diagnosed with FGN did you get to this point (dialysis and transplant)? I don't think my nephrologist ever had a patient with FGN and he doesn't know how fast it will progress. The research says 5-10 years. The last 6 months my labs have been going up and down. When they are up they are normal. When they are down they are lower then the time before. I have a feeling that this is the beginning of the end for my kidneys. I didn't know if I should share this with you guys, but I figure we're all in the same boat so, I might as well. I don't plan on going on dialysis or having a transplant. I'm a nurse and neither option is something I want to pursue. I'm single and have no children, so it's just me to worry about. I just wish I had some idea of how much time I have. I would like to stop working and do some things while I have the umph. I hope I haven't made anyone depressed. I am very confident in my decision. I wish Maconham and Judi good luck with their medical procedures. My prayers are with you both and everyone else on this site.
I feel fortunate that I may not have to go on dialysis. My Nephrologists here in Macon GA, Dr Ludwig Cavaliere, is really on the ball. He is the owner of a local dialysis centers and believes in doing everything possible to keep you off dialysis until absolutely needed. I have heard that some Nephrologists will place you on dialysis when you hit 25%. His wife, Dr Maria Cavaliere, is and was my primary doctor before I had FGN and knew of Dr Ludwig. She probably saved my life when my BP was staying in 220+/110+ range, which is why I fired my previous doctor and moved to her. She takes FULL control over her patients, has emailed me at night when things were out of control just to see how I was doing. I can contact her anytime at the office or after hours by cell or e-mail. Taking the immune suppressant drug Cyclosporine since last Dec, she wants to know immediately if I have a fever, cold or anything. Once early on she had her head nurse walk me to the ER when I was having difficulties, a migraine that wouldn’t end and a BP in her office of 262/116. Her office is in a wing of the Coliseum Hospital here in Macon a couple miles away from her husband’s office and dialysis center. That day was another story in its self, I think had every scan, x-ray and blood test the hospital knew about before they shot Dilaudid straight in my IV six hours later. The pain ended before the syringe was all the way down, about 20 seconds to end the day from hell, I happily walked out of there and my wife brought me home. The two of them work together closely on all my meds and she keeps control of what I take and of my lab work, he will tell her what he needs, that way I don’t have to go to both offices to get my labs. He works closely with the Medical College of GA 140 miles away in Augusta GA. Every few months on a Friday he turns his office over to Dr Laura Mulloy, she is a primary transplant Nephrologists at Medical College of GA in Augusta. She brings a team in to perform follow-ups on their transplant patients here in the Macon area so they don’t have to make the long drive to Augusta. Back in June I received a unexpected call one Friday to come to his office immediately, I had no idea why until after I met Dr Mulloy there that afternoon. She told me that Dr Cavaliere had been discussing my case with her before she came over that week and she wanted to see me. She said in my condition with FGN that she would prefer to get me into the transplant program prior to going on dialysis, the end results would be much better. They had another team that came over a month later to perform the transplant orientation for about a dozen of us, I was the only FGN there, and set up our appointments for full day transplant evaluations in Augusta, mine is three weeks from now. Sorry I got so long winded, but that is my story.
Maconham, So how long after first being diagnosed with FGN did you get to the point that the doctors were discussing transplantation?
Tonight I moved my daily dosage of 200 mg Cyclosporine back four hours from 10 PM to 6 PM and now experiencing a burning sensation in my hands, face, legs and feet from warm water from the shower. My face feels as if I have a fever, but my temp is normal. I remember when I first began Cyclosporine last December feeling very similar. I had became so restless at night I hope by moving it back 6 hours before I go to bed to end that, if Cyclosporine is the culprit, restlessness is listed as a major side effect. My last issue with Cyclosporine was an interaction with my cholesterol meds back in March that sent my GFR down to 17%, caused severe leg cramps when Rhabdomyolysis developed, real nasty.
Do any of you take Cyclosporine and have you had any of my issues?
Tiredness, then sometimes restlessness. The "heat" feeling, the muscle cramps and especially migraines. I suffer this all and my GFR is still good. Now I worry that it will all get worse when my GFR isn't so good. My local physicians and the ER docs don't know much about FGN, so I get treated like I'm maybe a junkie or something LOL. But I travel over an hour to see my nephrologist at O.S.U. Dr. Brad Rovin. And some days I feel like maybe I should just move up closer to where he is so that I am understood. I was diagnosed a little over 3 years ago but so far have progressed slowly. I just think I was diagnosed earlier than most are. Unless by chance you have a PCP who does specific tests regularly, the only indication of such a problem as this is hematura, that is before bad bloodwork. I was lucky that my PCP was persistent in finding out why I had blood in my urine when there were no infections present. In most everyone else's case, it was the bloodwork that indicated a problem.
I don't think anyone can condemn another persons choice to choose dialysis or not. It can be a horrible process for some. And if you choose not to go through that, then kudo's to you.
I am learning so much from all of you. I started this page because I didn't understand what was happening to me and with the small amount of information I could find, I figured there had to be others out there as confused as me. But talking to one another like this is what will help others when they question it all too. I'm not sure what trials there are, but I do know that the last time I saw Dr. Rovin, he was perplexed, LOL. He had actually looked forward to the progression in my illness so that he could try a new medication that was out. If I remember, I will ask him about it next time I'm there.
I am only on Metoprolol for my BP. Nothing else whatsoever. But for the last 2 months I have been having these "spells". When I described what happened during each, my PCP ran a few tests and came up simply with "mini strokes". I had a brain MRI and ultrasound of my carotid arteries this past week and have yet to hear back from him.My cholesterol and tri's have been good so far as I know or I'm sure I would have heard about it.
I'm not taking anything for the cramps, but since I started back on Neurotin they have lightened up. I take that for fibromyalgia. I cannot take Lyrica or any other meds for it because I gained too much weight and fluids. Also, some of the meds for it causes bleeding and we all know with FGN that we need to avoid that. I have recurring ulcers also. But I had a total colectomy done at the age of 17 and that is to be expected so I don't believe it has anything to do with the FGN. I go through long bouts of depression because I am so tired all the time, and weak. Again, I'm worried about how much worse that will get when my FGN progresses. But having you all share it all here and on our face book page really helps me. And I am so glad that both help you all also. Stay in touch and never give up hope.
Anita
I appreciate you forum and your comments. I am fortunate on several respects, one that I had never thought about until reading your latest. I live about 4 miles from my primary care doctor’s office and 5 miles my Nephrologists. Both are very sharp, married to each other, share my case after hours and I have a 24/7 cell phone number and email to contact for them, if needed. FGN still stinks, but I have fantastic medical support and for that I thank God.
I really apprecaite all the comments about FGN. I have a great PCP who also wanted to get to the bottom of why I had blood in my urine. The nephrologist he sent me to didn't want to take any unnecessary chances so he sent me to St. Louis to get a 2nd opinion. My kidney stages haven't moved up or down and seems steady but I am battling such a tired feeling, depression and constant UTI's. After reading all your comments I realize I'm not alone. I don't want to go into another stage but I hate this just sitting and waiting. I see the Nephrologist next week and my PCP tested me last week and found the UTI. I don't have any symptons so I opted to wait on antiobiotics until I see the nephrolgist. You just never know what to expect!
I went to my nephrologist a few weeks ago. I couldn't wait for my appt. Both of my flanks were killing me. I was severely tired. I had no appetite (food tasted terrible to me). I couldn't concentrate at work. My doctor said he didn't think it was my kidneys. That really upset me. I asked him if he ever had a patient with FGN before and he said no. So I asked him if he was treating me like his other patients with glomerulinephropathy (which I also have) and he didn't know how FGN progressed. He said YES. Well that put a fire under him. He ordered labs eventhough I had just had some 1-1/2 weeks prior. He thought it was unnecessary. He was going to order an ultrasound to see if I had stones because I went one day at work without urinating at all. Guess what- I was severely dehydrated, my proteinuria went up, my GFR went down and my potassium level was too high. He sent me for a non-contrast CT of my kidneys instead of the ultrasound. Fortunately, I had no stones. He did cut back on my blood pressure medicates and low and behold- my back stopped hurting and I starting urinating normally again. I decided to check into seeing another nephrologist for a second opinion. I was thinking about seeing one of the doctors mentioned in this blog, but my insurance only covers the states of Oregon and Washington. I found two nephrologists at Oregon Health and Science Univ that have a lot of experience with FGN. I'm going to have my records sent to them. I won't be able to get an appt until December. Oh well. What can you do. Mean time I am getting new labs tomorrow and seeing my local nephrologist next week. I'll keep you guys informed.
aw my nephrologist yesterday. I've been fighting depression, posted the other day as glenngay instead of this sign on. I've got a back ache but no other signs of a UTI that my labs showed positive. Nothing cultured so therefore both the PCP and the nephrologist decided not to put me on antiobiotics. My creatine level has come down from 1.9 too 1.5 but my kidney function has dropped to between 30 and 40%. The doctor is not worried yet about the drop but his knowledge of GFN is practically nil. He feels confident that we just need to sit and wait until things start to change dramatically and he said no one knew when that could be. I just need to keep going for lab work every 2 months and when there's a signicant change he'll let me know. I DO NOT like being in control but I don't want to be sick either.
I'm on an antidepressant now. I've had days when I can't stop crying. I'm glad to hear it's not JUST in my head that my back hurts. The doctor keeps saying it's not my kidneys, but I think he's wrong. He upped my diovan again and boom- my back starting hurting big time. I didn't take any meds today to see if it would help. Right now I feel okay. I'm suppose to keep getting labs once a week for the next 3 weeks on the increased dose of diovan. I'll try taking the medication tomorrow and see what happens. My doctor said he was okay with my going for a second opinion, but I think he is really angry at me. Either for my wanting to see another doctor or being right about my kidneys going south last time I saw him. Anyway, all my records were sent to the new doctor in Portland. I'll call tomorrow to see about getting an appt with him. My doctor in town doesn't want to see me again until after I see the other doctor. He made it very plain that he didn't want me as his patient if the other doctor gave me treatment options. What an idiot!!!! I'm the one with the fatal disease and he's angry. Sorry for venting. I just needed to get that off my chest.
Well, I have my appointment with the doctor at OHSU on Dec 12. I'll let you guys know how it goes. In the mean time I have to get labs here every week. The protein in my urine went from 300mg to 1 gm in less than a month. I think things are starting to progress.
Hi everyone, I'm so glad to have found this hub. I was diagnosed with Fib gn in August and have had a really hard time finding more than just clinical info. I needed to talk to people who are actually dealing with this and there you are. I think by networking this way everyone eventually has to benefit, there is so little info out there. My Nephrologist seems to know his stuff, but I guess I'll know more when I go for my first post-diagnosis appt early in December. Will let you know if he has a spin on this I haven't already read. He is a professor of nephrology so I'm hopeful. Being Australian I'm in an even smaller group of "special" patients with our population being relatively small. Keep as well as you all can and will follow closely.
Hi All
First up, Cousinit, You are not the only Aussie here:)). Can't believe it's been 14 months since I did a post. I'm still doing OK, but out of the blue, I have Gout, never had it before and would prefer not to have it again. I have avoided the Neph for 6 months, but I know I need to go back for a check up. Anita, looking over the posts, once again, you have done a great job with this, giving people somewhere to talk to others in the same boat, wish I could put you up for a reward for services to the international community. Just to restate, I was told in 2003 to take any overseas trips I wanted to do by 2005, as my kidney functions would diminishing quickly. It's 2011, I have had this for perhaps 10 years. There is always hope and I still maintain, there is more than one strain of FGN. I will be back weekly to check how everyone is doing.
Peter
Hi Still Here, great to see your post. I never thought I was the only Aussie I just couldn't find any others. I am so pleased to read how well you have been doing and it does give a lot of hope. Are you on any treatment regime? I do feel for you with the gout episode, it's a bummer! As for the "strains of FGN" have you been advised of that or is it a position you have come to? Sorry to quiz you but you have so much more experience with this and I needed more than anything to make this kind of contact; can feel very lonely sometimes. Wishing you well. Heather.
Hello, I have not posted in awhile, but needless to say since my last post i went downhill. My GFR went from 39 to 23 and it got to 8 on the 24 of Oct. My legs were swollen beyond belief, I could barely walk and felt really bad, also I had an ammonia breath. I called my nephrologist and he said to go to the ER asap. To make a long story short a subclavian port was installed on my neck and emergency hemodialysis was initiated since i was almost dead from excess body fluids as well as enormous amounts of phosphor. I has not been a pleasant experience, but so far over 12 kilos of fluids have been extracted from my body as well as a lot of harmful substances from my blood. I have opted for Peritoneal dialysis and the procedure has been done. I will keep you posted. God Bless you all.
As a continuation of the above post. i feel physically much better now, but mentally I feel very depressed, it has been a substantial event in my life, involving a 180 degree pattern change. The clinic where my hemodilaysis is being done has scheduled an appointment with a psychiatrist to begin treatment for mental condition.
Hi
Larry, I understand the fluid problem, but not to the extent you are talking about. Hope it gets better for you.
Cousinit (love the name), I have over the years asked why I have been able to live a normal life, yet others who suffer from FGN suffer so much. It is my opinion there are more than one strain, otherwise, why have I been so lucky up to date? Simple fact is, the medico's don't know and neither do we.
My current meds are, Micardis 40mg ( this does make a difference to protein levels, Perindopril and Lercanidipine.
Peter
Hi Peter, your logic certainly makes sense. I hope I will be as lucky as you, I plan to be. I will have many questions for my Neph in three weeks as I was blindsided at the diagnosis and unable to think. Do you find fatigue is or has been a problem for you? As for the name cousinit; that was given to me years ago by my son's teenage friends when I appeared one Sunday morning just a little the worse for wear with my long red hair very untamed. Hence Cousin It, Keep well. Heather.
Hi All, I've finally had the time to read this site from the beginning and just have one question. Did anyone get there diagnosis following a sudden episode of acute renal failure? That's what happened to me and I wondered if any of you had the same experience. I just started vomitting one morning, just fluid, and my GP ordered bloods on the spot, next thing I know I'm 3 days in hospital. It settled itself in about a month(creatanine levels) but protein and blood levels in urine won't go down. Biopsy did the rest. I just wondered as this might give me an idea where I might be at regarding progress. Best to you all. Heather.
Hi Heather
With me, I thought it was a UTI and was treated as such.
Peter
Heather,
FGN came out of left field for me, I had no idea that I had any kidney problems. I had been battling high blood pressure for about ten years, with the wrong doctor. Early last fall my BP had gotten up in the mid 200’s over 100 – 115 on a daily basis all while taking a half dozen pills per day to control it. I started becoming real weak, I couldn’t climb the stairs I normally took daily at work without pausing at each level to catch my breath. Then my previous doctors new partner removed all diuretics from my daily meds, in less than 48 hours my feet and legs had swelled to a size that I had never experienced before. I changed doctors at that point, thank God!
My new doctor found notes from four years prior in my previous doctor’s records where a surgeon commented that my kidney function needed be looked at closer due to my lab reports from a previous surgery. She also noticed that half the BP meds that I had been on for some time were deadly to my kidneys. She changed all my meds and referred me to a Nephrologists, he performed some test including a kidney biopsy, and found FGN.
Now, for the first time in ten years, my BP has been under control since last Dec. I was also placed on 200 mg per day of Cyclosporine last Dec which has kept my GFR between 20 and 26% all year. I still get tired easily, have bouts with muscle cramps and joint pain which appear to be from the side effects of Cyclosporine. My current doctors are great, they have gotten me on the inactive transplant list at GA Medical College and they keep a constant eye on all of my blood work for any changes.
It still stinks that I have FGN, but good that I have a first class medical team supporting me.
Peter, your thoughts that there may be more than one strain of FGN is interesting. I have also noticed how much different each of our situations have been. I had written it off to the treatment options and had wondered if it is Cyclosporine that has made my situation different, ???
Bill
Hello,
My doctor thought something was wrong about 8-1/2 yrs ago when I had 2 back to back uti. I had protein in my urine both times and the doctor sent me to a nephrologist. A year prior to that I started spilling large amounts of blood in my urine. She sent me to a urologist who told me it was because I went through menopause and the acidic urine and lack of estrogen was causing my bladder to be irritated (boy was he wrong). I didn't have a kidney biopsy until a year ago. My nephrologist just thought I had glomulonephritis and was treating me for it. I went to another nephrologist for a totally different thing and he couldn't believe that I hadn't been biopsied. My doctor finally did it and I had both the glomulonephritis and FGN. FGN is my primary diagnosis. My creatinine has been under 2. My BUN has gone from normal to the high 40s. My GFR keeps bouncing around from greater than 60 down to 39. In the last month my protein/creatinine ratio went from double digits to 1 gram. I think it's my diovan doing it. My doctor cut it to half, then upped it by a quarter and then put me back on the full strength- 320 mg. I've been getting blood work done every week for the last 2 weeks. Already my BUN has gone up. I'll see what happens next week. My doctor has never treated anyone with FGN so I'm going next month to a doctor who has. I want to try and find out how my disease is progressing in relationship to everyone else's. They say you need dialysis in 5-10 years after the first symptoms. The blood in my urine was 9 to 9-1/2 yrs ago.
Bill
After being feed B-----t for just on 10 years by doctors, like my previous posts, I decided to forget the medico's, to stop worry about what may happen and just spending my time with my family. I still maintain that as much as I have had a biopsy in 2003, which they said they confirmed I had FGN, I do not seem to have the same problems as the rest of the people on this post. I like my scotch, about 2 bottles a week!! I like my smokes, about 140 a week!! My BP stays at 140 over 100. So what an I doing so different to the rest of you??
I just do not understand why I am so lucky with this, when many of you suffer so much. This is why I believe there is more than one strain.
Peter
Peter,
It must be the scotch!:)
Bill
Status update: I no longer need hemodialysis, Home PD has been a success. Neck catheter will be removed next Tuesday, God willing. :) Feeling much better now, strength is slowly coming back and legs are no longer swollen. PD is 4x a day, 2.5liters of 1.5% dextrose and 2.5 dextrose
Hello Everyone
I was diagnosed two years ago. The last 9 months my numbers have increased 1.7 to current 3.6 I was at my Primary for annual physical and he was shocked at my levels. I did feel the last time I was at the specialist that he was giving me the Holidays and probably be sending me for a fistula soon. My primary confirmed that Tuesday.
Larry did they give you the choice of PD vs Hemo? Did you go to any support groups? I'm only 47 and really not ready for this change in my Life. I'm trying to stay strong for my husband and sons.
Helen
Helen,
Sorry to hear things are not going well for you right now. Try to keep strong and positive. I'll keep you in my prayers.
Still there, you were right- there are 3 types of FGN. Primary, Amyloid and I think idiopathic. I have Primary. The doctor in Portland said he had a lot of FGN patients that went beyond the 10 year mark before needing dialysis. That was a major relief for me. I'm going on 10 years now. FGN is caused by something autoimmune. All the major diseases were ruled out for me (Hep B/C, Lupus and cancer). The doctor said I probably would never find out which caused this. He also doesn't treat FGN because the medications are not focused on the kidneys and do too much damage to the other organs. I'm on a low protein diet now (75-85 gm/day). Maybe that will stop the increase of protein in my urine. I'll keep you informed.
Maconham, how are things with you? You haven't said lately and I was concerned.
Bad news and good news. PD was going well for a while, but I developed a hernia for unknown reasons. PD was discontinued and a subclavian catheter installed on my neck again to re-start hemodialysis. The good news is that my wife is a perfect match for a transplant and more than likely the procedure will be done in March or April.
einron Level 3 Commenter 3 years ago
anitariley65
I am sorry about your problem and hope someone can help you. God is the best hope of all. Will pray for you.