I Hate Dialysis Message Board

Introduction => Introduce Yourself => Topic started by: soopdragon on November 22, 2012, 04:13:14 AM

Title: Hello!
Post by: soopdragon on November 22, 2012, 04:13:14 AM

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  :o 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  :clap; 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  :yahoo; 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  :bow; 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!

Title: Re: Hello!
Post by: MaryD on November 22, 2012, 04:26:41 AM

 :welcomesign;   Soopdragon

It looks as if you've had a go at just about everything.  Hang in there!

Title: Re: Hello!
Post by: Traveller1947 on November 22, 2012, 05:23:02 AM

Hi, Soopdragon and welcome!  I'm glad you've joined us.  With your long experience, you'll have a lot to contribute here.  The good people here, collectively, have a lot of experience too and will be happy to help you, listen to you and support you in your troubles.  There are some laughs here too...All the best to you.

Title: Re: Hello!
Post by: Rerun on November 22, 2012, 09:27:32 AM

Hi, I'm so glad you found us.  Sounds like you have been through the mill.  Glad you are doing okay right now.  This site is awesome!  I hope you post often.

Rerun, Moderator    :welcomesign;

Title: Re: Hello!
Post by: cassandra on November 22, 2012, 04:22:15 PM

Welcome to the site Soopdragon    :welcomesign;

take care Cas

Title: Re: Hello!
Post by: Poppylicious on November 23, 2012, 02:46:50 AM

 :welcomesign; soopdragon!  What a story, and an amazing sister!  I'm in the UK too (there's not many of us *grin*).

Title: Re: Hello!
Post by: wearbear on November 25, 2012, 09:17:10 AM

Awesome story! I love to hear about folks who make me seem like a newbie.

Title: Re: Hello!
Post by: lmunchkin on November 26, 2012, 06:21:54 PM

Welcome to the Family, Soodragon!  Lots of support here!

God Bless,
lmunchkin :kickstart;