Hi everyone, wish I'd come across this site years ago!
I'm in the UK and have a loooooong history with dialysis so here's my story:
I started having problems aged 9 (1979
omg I'm old!) and was diagnosed with MCGN, the non curable type *sigh*
I was put into a drugs trial using a placebo or steroids (I looked like a pumpkin so I was on the steroids obviously lol) that didn't work so by aged 14 I was in complete renal failure and chose to go on CAPD. (1982)
In 1984 I had a transplant WOOOOP!! It lasted 6 months BOOOOOO!
Went back on CAPD but in mid 1985 I had a severe case of peritonitis that meant I had to go on Haemo. I hated it full stop!
Dark times ensued as the three days dialysis in hospital got me down, get to the hospital at 8am, wait for 1 hour to be needled, 4 hours of hell and then a two hour wait to be taken home. Aaaaaaarrrgggghhhh.
So, one day I ask to put my own needles in
you understand that I'm only 16 at this point. After that I decide to train to use the machine myself and on 18th March 1987 I dialyses on a Gambro AK10 at home for the first time
I was also on the human EPO drug trials.
Many years, fistulas and ups and huge downs later (2011 July 22 to be exact) I had a transplant from my amazing sister
that is still going strong today.
My health isn't good and the only difference the transplant has made is that I don't have to dialyse, something huge in itself but the amyloidosis, bone disease and arthritis are a right pain plus calcium issues due to a total parathyroidectomy, my new kidney doesn't know when to stop getting rid of it and goes over the top lol
Erm, that's it!
I Hate Dialysis Message Board
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