I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Sully on August 13, 2018, 12:17:27 PM
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Hello fellow dialysis haters, I'm Sully. I am 36 years old and I'm from Anchorage, Alaska.
In June 2017 I was hit with some kind of auto-immune disease which attacked my kidneys and put me into renal failure. At the time, the biopsy result showed it was IGA Nephropathy. July 4th 2017 I started hemodialysis and later that month I was back in the hospital due to my lungs bleeding and had to undergo plasmapheresis. I'm told that I have necrotising crescentic glomerulonephritis (try saying that 3 times fast!) and that I am c-ANCA positive. So, they think my auto-immune is some kind of ANCA Vasculitis.
I am working towards getting on the transplant list and I finally finished all of the prerequisite testing, so hopefully I go active on the list soon. I know it will be a few years before I receive a transplant because of the waitlist, but I'm anxious to get on the list. As for dialysis, I still do in-center HD because I tried PD for a couple of weeks and it was a horrible experience. My first AV fistula clotted at the 5 week mark and there was nothing they could do, so I had to get a second one. Fortunately, that one has been working perfectly so far.
Anyways, I browse these forums enough that I thought I would finally post my story and say hello. So hello! :waving;
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Hello Sully and welcome to IHD,
These autoimmune-diseases have sometimes lots to answer for ... especially when they attack the kidneys during a flare-up ... in my case it was mainly Systemic Lupus and MCTD & also Vasculitis etc. ... But fortunately the kidney research has developed very favourably for us and I am also hoping since being on the transplant waiting list and I wish you all the best and good luck with becoming active as soon as is possible.
Welcome to IHD and I send you my best wishes from Kristina. :grouphug;
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Welcome to the site Sully
:welcomesign;
Good luck, Cas
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Oh, wow! I've never heard of that, Sully. Several of us here have FSGS (focal segmental glomerular sclerosis), and I am trying to think of how your condition is different. Maybe your tissues are dying (hence, "necrosis") as opposed to mine just scarring over (hence, "sclerosis"), and perhaps the damage is occurring in a different site or way in the kidneys.
Anyway, I suppose it doesn't matter in the end, does it.
Good for you for getting the testing done to get on the transplant list. At least it helps you feel that you're doing something to fight back. Let us know how you get on.
Welcome to our community!
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:welcomesign; Sully. Your condition is a mouthful. Just know that when you get on the list, you will get credit for all the time you've spent on dialysis-- since July '17. Best of luck.
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:welcomesign;
Hello Sully. Welcome to the site.
I'm told that I have necrotising crescentic glomerulonephritis (try saying that 3 times fast!)
I'm not even gonna try saying it once!
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Welcome!
I love Alaska! I lived in Denali for a little while. Beautiful.
Is there a transplant center in Anchorage, or do you have to fly down to... Seattle maybe?