I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Malibu on January 28, 2010, 01:39:13 PM
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BASSMAN,
I saw in another post that you have membranous glomerulonephritis. This is what my husband has as well. His started in 1997. I don't believe I have discussed the disease with anyone who has it. Perhaps this post will be educational to membranous glomerulonephritis newbies.
MM's ankle swelled up one day in 1997, we went to the Dr who sent us to a Neph. They did not have an appt until 3 mo's time so I did what I thought was necessary to secure an appt sooner: I begged and started to cry on the phone! :boxing;
They gave him prednisone and Leukeran (a chemo drug), the disease progressed. He was on Coumadin when his platlets (sic) fell to 18 (18000) and he received 2 blood transfusions. It might be because his sister was pregnant at the time she gave her blood or it might be due to the chemo, who knows, but he went into remission. In 2007 it came back, progressed despite all efforts to slow it. He was on prednisone 60 mg at first, then 40 and tehn 20 and he was on 3 different types of chemo meds. All of that proved to make him feel awful.
So what is your story...and are you on dialysis? I am sorry but I cannot remember if you are!
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As I posted in the biopsy thread. It all began 20+ years ago with ankle swelling. I had no idea what it was. I went to a GP and he referred me to a neph. The neph stated that I needed a biopsy so he would know specifically what I had and how to treat it. The biopsy confirmed MGN (membranous glomerulonephritis). At the time my neph told me that this was an experimental treatment using prednisone and Chlorambucill (Lukeran is the same drug).
My MGN was ruled idiopathic (meaning of unknown cause). It is an autoimmune disease. Slow progressing. It is actually kind of rare.
I was spilling over 10 grams of protein in a 24 hour period at diagnosis. The proteinuria decreased substantially after the treatment. My creatinine was 1.2 at that time and has slowly risen over the past 20 years. I have had low blood albumin, high cholesterol and triglycerides the whole time. I have been on various ACE inhibitors and several different statin drugs for 20 years. My LDL/HDL ratio is bad and always has been. Though my total cholesterol is now under 200. I have take furosemide/lasix for the past 20 years to keep the edema off.
I am not on dialysis yet. I hope to bypass dialysis and go straight to transplant. I have been on a slow deterioration of kidney function for 20 years now leading up to fistula placement and I am just finished my transplant evaluation. My goal is to try for a preemptive transplant. My wife will start testing to be my donor soon. We have also agreed to participate in a kidney swap each she is not a match.
I am one of the lucky ones with insurance through my company but in these times, who really knows how long that will last. I wouldn't be able to afford the cobra should something happen with my job.
That pretty much sums it up. If you have any specific questions that you would like to ask, be my guest, ask away.
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MM's is idiopathic as well. This is the first time I have heard it was an autoimmune disease tho.
MM's path with this awful disease sounds just as yours, spilling tons of protein; his albumin has been at 1.5 for a very long time, just recently though it is up to 2.5. He has been treated with the same drugs as you, his GFR quickly deteriorated from 42 or so in 2007 to 3 in Nov 09.
We had insurance with the first flare up but when it went up to $850 a month we could not afford it and lost it. Of course no one would insure him after that. Yes, you are lucky with your job/insurance. Apparently there have been changes in COBRA recently, a friend was fired from his job (incidentally because his dialysis treatments were draining the insurance!) and his COBRA is only (around) $135 a mo.
MM had 495 total cholesterol at one time... Now it is under control and 210. I can't say the same for mine. It was wonderful when he was in remission, he actually went off all drugs totally and was fine for many years. It has been a quick road down to dialysis though. He resisted something terrible and I can't say that I blame him. It is so scary just before you start dialysis. We did the lo protein diet, wasn't helpful to the 1.5 albumin and honestly it didn't do any good to stop the progression of kidney deterioration either.
I recently actually had the opportunity to talk to the Nurse who worked with our Dr from way back when he was sick before. What a nice person she is. She said that she could not believe MM had gone this long without dialysis, was amazed. Well, we all were. He was just scared out of his brains I guess.
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Some good info'
http://en.wikipedia.org/wiki/Membranous_glomerulonephritis
MGN is caused by circulating immune complex. Current research indicates that the majority of the immune complexes are formed via binding of antibodies to antigens in situ to the glomerular basement membrane. The said antigens may be endogenous to (from) the basement membrane, or "planted" from systemic circulation.
The immune complex serves as an activator that triggers a response from the C5b - C9 complements, which form a membrane attack complex (MAC) on the glomerular epithelial cells. This, in turn, stimulates release of proteases and oxidants by the mesangial and epithelial cells, damaging the capillary walls and causing them to become "leaky". In addition, the epithelial cells also seem to secrete an unknown mediator that reduces nephrin synthesis and distribution.
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Was your husband confirmed by biopsy?
It usually progresses at a slow rate of decline. That seems really fast for MGN, but I suppose anything can happen and everyone is different.
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Well I certainly understood that entire post. :rofl;
YEs, they did a biopsy in 1997. He smoked back then and when they told him he had to lie flat on his back for 12 hours he said If you don't get me a wheel chair I'll find one on my own. Went down and outside to smoke! It was a slow rate, 12 years. Who knows how long he had it before that.
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I didn't understand it either but I suppose it means autoimmune. :rofl;
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I also have mpgn. I have type 1, idiopathic. I was diagnosed when I was 11, from an unsual UA value on my 5th grade check up. Mine stayed in a stable condition for years (11), until last year where my creatine jumped from 2 (which was normal for me) to 6! and it literally happened over the course of a couple weeks. So I guess it can come on pretty quickly depending.