| Author | Subject: Autoimmune renal failure |
| Pat | Posted At 16:13:58 08/19/2002 I wonder if there are others who mysteriously succumbed to renal failure? When I went to Emergency with extreme fatigue and loss of appetite, the doctor on duty said I had a virus. A month later, I could cope no longer. If I tried to eat, I threw up. I was rotating every two hours between sweating profusely and shivering violently. This time the Emergency doctor told me my blood count was 70 and insisted I stay overnight. They swaddled me in hot blankets to calm the chills. Next morning, they shipped me off to a larger hospital where I was tested for a stomach ulcer. They said heat for the chills was entirely wrong and instead stuck ice packs in my armpits. The ulcer test being negative, they shipped me off to yet another hospital and assigned a urologist to me. He told me I was suffering from renal failure and that it should correct itself in short order. He was adamantly against dialysis because he said once it was started, it could never be stopped; the kidneys learn very quickly to stop processing fluids. Two weeks and 65 pounds of fluid retention later, he shipped me to yet another hospital where I was immediately started on hemodialysis. When I was well enough, a biopsy diagnosed interstitial nephritis. I was also put on megadoses of prednisone. For the next few months, they tried everything to jump start the kidneys, to no avail. I°ve been on renal dialysis now for over three years. My kidneys handle potassium, phosphorus and sodium just fine. However, they no longer produce hormones nor can they dispose of creatinine and urea. The urologist was dead wrong about the fluid retention. Instead of retaining fluid, my kidneys are like a sieve, putting out about 3 litres a day. Until recently I was plagued by night cramps. I tried all the usual remedies: quinine, Vitamin E, even Gabapentin, to no avail. Then the dietician suggested I measure my fluids in and out. It turned out I had a deficit of 700ml! Now I forego coffee after noon to avoid the diuretic effect and drink two big glasses of water before going to bed. At last, a good night°s sleep! The cramps were caused by dehydration. Because my condition is rather unusual, it doesn°t show up on any of the renal information sites. Perhaps there are others out there who have had a similar experience they°d like to share. I°d really like to know if anything can be done in these cases to avoid the end-stage renal failure that apparently was not supposed to result from this acute attack. It°s too late for me, but others might be helped by the knowledge. In addition, when I was called for a transplant they discovered I°m 90% sensitive. Has anyone found a suitable donor with this handicap? How long did it take? |
| Beth Witten | Re: Autoimmune renal failure (Currently 0 replies) Posted At 00:26:26 08/20/2002 It sounds like you went through a lot before you finally received the treatment you needed. I'm sorry that you couldn't find information that could provide the information you needed. One place where you can find information you can trust on interstitial nephritis is at www.nlm.nih.gov/medlineplus/ency/article/000464.htm. You say that you are 90% sensitive. I assume that you mean that you have 90% panel reactive antibodies (PRA). You can get antibodies from pregnancy, transfusions, prior transplants, or a current infection. You might ask your doctor whether he/she expects your level to remain high or whether it could drop over time on its own or with additional treatment. Transplant 101 by the United Network for Organ Sharing (UNOS maintains the U.S. transplant waiting list) defines panel reactive antibody (PRA): "The percentage of cells from a panel of donors with which a potential recipient's blood serum reacts. The more antibodies in the recipient's blood, the more likely the recipient will react against the potential donor. The higher the PRA, the less chance of receiving an organ that will not be rejected. A patient with a PRA of 80% means that they will reject 80% or donor kidneys. Patients with a high PRA have priority on the waiting list." |
| Pat | Re: Autoimmune renal failure (Currently 0 replies) Posted At 14:04:15 08/20/2002 Thanks for the suggestion, Beth. I didn't find out much I didn't already know about interstitial nephritis. I'm still looking for information about autoimmune renal failure, which is apparently what happened to me. I used to have an autoimmune condition of the eyes, episcleritis, which was calmed with a drop of Prednisone but recurred every five to six weeks for nine years. A few months after my kidneys failed, I realized that the episcleritis was gone. When I mentioned this to the ophthalmologist a year later, he stated without reservation that the autoimmunity had transferred from eyes to kidneys. What I have wondered is if the Prednisone which worked so well on the eyes had been started sooner for the kidneys, they might have been saved. As you say, I have 90% PRA - as a result of a pregnancy 40 years ago, 6 units of blood when I had a cystectomy 15 years ago, and about 8 units since starting dialysis. I am heartened at the suggestion that the antibodies might decrease in time. No one had suggested that before. I am in Canada. I'll have to check to see if sensitivity affects priority here. However, since I have been called once, I expect my name remains right up there. The coordinator did say that they once transplanted someone with 100% sensitivity, so my case isn't completely hopeless. |