I Hate Dialysis Message Board

Introduction => Introduce Yourself => Topic started by: stauffenberg on August 22, 2006, 11:29:14 AM

Title: New member
Post by: stauffenberg on August 22, 2006, 11:29:14 AM
Before I developed renal failure, I was living a hyperactive life as a university professor at two separate universities, one in England and one in Germany.  Suddenly, however, I was struck down by Wegener's Vasculitis, an extremely rare autoimmune disease which transformed me from a healthy, young-llooking man in his forties to a feeble renal paitient in the span of just two weeks.  I spent eight years on dialysis, during which I was unable to work and endured a kind of living death, during which my existence was plagued with hypersomnia, constant nausea and vomiting, itching, difficulty concentrating, and exhaustion -- despite my rigid adherence to the renal diet and 15 hours of hemodialysis a week.  Eventually I got a transplant, and the effect was immediate and remarkable, since I felt truly awake for the first time in years just minutes after coming out of the recovery room following the operation.  In the year since then, I have been able to return to work and feel about 80% as healthy as I did before renal failure.  The main limitations I experience are from clouding of the vision due to cataracts forming in response to the prednisone dose; tiredness from persistent low hemoglobin levels; and severe, month-long illness when I get the winter flu.  Still, I feel incomparably more healthy than I did on dialysis, and now realize that I was unable to perceive during dialysis exactly how far I had dropped below the level of normal living.
Title: Re: New member
Post by: goofynina on August 22, 2006, 11:40:24 AM
Hi Stauffenberg and it is very nice to meet you.  I am so glad you came and introduced yourself, thank you, :)   Please do read more and post more,  i think we can learn alot from you (especially since you are a professor) lol, ;)  But again, Welcome.....
Title: Re: New member
Post by: Joe Paul on August 22, 2006, 11:50:04 AM
Welcome stauffenberg , glad to have you aboard.
Title: Re: New member
Post by: Bajanne on August 22, 2006, 11:58:50 AM
Welcome to our board.  You really went through the wringer!  Glad to see you on the other side now.  I trust you have many years in this experience.
What subject area are you in?  Are you still teaching now?
Title: Re: New member
Post by: mallory on August 22, 2006, 12:16:30 PM
Welcome, stauffenberg.  It will be good to have you post, I was glad to see you were able to get a transplant even though you have Wegener's, I have vasculitis as well (Microscopic Polyangiitis) and I was getting the impression from my Nephrologist that I might not ever be able to qualify for a transplant because of the vasculitis.  I'll look forward to your posts and your opinions!
Title: Re: New member
Post by: Black on August 22, 2006, 01:19:25 PM
... Still, I feel incomparably more healthy than I did on dialysis, and now realize that I was unable to perceive during dialysis exactly how far I had dropped below the level of normal living.

You certainly have had a very difficult time -- I can't imagine what it is like going from very healthy to dialysis in just two weeks.  :o I hope you continue to improve.  :) That someone with a working transplant would post here is very kind and generous.  Your experience can be valuable to us.  I look forward to reading your posts.
Title: Re: New member
Post by: stauffenberg on August 22, 2006, 04:47:12 PM
I teach in the area of history of medicine, having studied medicine but never practised it, except on myself!  I am now working once again, though the first year back teaching was difficult, since I had to keep missing appointments and rescheduling classes because of the intenisve medical follow-up program, which burdened me with more than 70 consults and diagnostic tests in a single academic year! 

It is quite possible to have a transplant if the patient has Wegener's Vasculitis, as long as the disease has gone into remission first, which usually happens within a few months of the initial attack.  Many cases never recur, but if they do while you have a new kidney, a slight increase in the immunosuppressive dose can usually prevent damage to the kidneys.
Title: Re: New member
Post by: Sluff on August 24, 2006, 04:48:42 AM
Welcome friend.
Title: Re: New member
Post by: Rerun on August 24, 2006, 08:27:17 PM
Stauffenberg, I like your style.  Welcome to our site.