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.
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 [1]
1)http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1885430
*****FibGN occurs in approximately 1% of renal biopsies [[8,11] and [12]]. It is more common in caucasians with a peak incidence between the fifth and the sixth decades of life [11].
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]
1)http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1885430
****(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.
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.
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.
(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
Laproscopic Transplant
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Comments
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
einron says:
10 months 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.