I Hate Dialysis Message Board

Introduction => Introduce Yourself => Topic started by: Joosthaegeman on December 15, 2011, 12:37:40 AM

Title: my story (very short version)
Post by: Joosthaegeman on December 15, 2011, 12:37:40 AM
Hello,

My name is Joost Haegeman.
I live in Belgium and I'm 28 years.

When I was almost 16 I was diagnosed with Multiple Sclerosis.(bummer)

Last year is thought I was gaining some weight. So I ate a little bit less...
My feet and lower limbs started to swell up.
Then in the morning my eyes were al puffy.

Doctor here I come.

(here is shortness :-) )

Suspected sfgs => kidney puncture 1 ... inconclusive(they poked me 5 times!)
heavy treatment corticosteroids
Treatment with prograft... kidney's shut down(byebye prograft)
Kidney puncture 2 ... SFGS confirmed
Leaking 20grams of protein...
shitty treatment with corticosteroids and Endoxan(cyclofosfamid)
then I had plamafereses.... 2 weeks my protein leak was reduced. then again 22grams
next treatment was with Ciclosporine.

the end... now Hemo dialysis .
still leaking protein.

In January they are removing my (for the rest still very nice functioning) kidney's .
Title: Re: my story (very short version)
Post by: Rerun on December 15, 2011, 03:52:31 AM
Hi Joots and welcome to IHD.  Sounds like you have been through a lot already.  I'm so glad you found us.  It will be interesting talking to you from Belgium.  Most of us are in the US and Canada but others are from all over the world.

Keep reading and be sure and ask questions.

Rerun, Moderator           :welcomesign;
Title: Re: my story (very short version)
Post by: Joosthaegeman on December 15, 2011, 05:32:32 AM
what I forgot to mention is that I don't hate dialysis >:D

I only have a problem with the fluid restriction...
and I still have cravings for chips! I love chips
Title: Re: my story (very short version)
Post by: billybags on December 15, 2011, 06:07:26 AM
Joosthaegeman   :welcomesign;  To the site. You sound like you have been through quite a lot. You say you are on hemo , is there any chance of a transplant in the near future. We live in the UK and they do try to give young people transplants when possible.My husband is on peritoneal dialysis and has been for about 3 years. Please ask any questions, there are always people on here that will give you some information. Look forward to your posts.
Title: Re: my story (very short version)
Post by: Joosthaegeman on December 15, 2011, 06:44:34 AM
Hello billybags,

I am currently undergoing a lot of pre-transplant test. A lot! From head to toe.

Everything is ok until now. Still a few to go then I have an appointment with the transplant coordinator and if I am allowed on the list there is a waiting period of about 3 to 5 years.
Title: Re: my story (very short version)
Post by: Joe on December 15, 2011, 12:11:41 PM
 :welcomesign;  Joosthaegeman! Hope you can gain some insight here at IHD. And like the site says, we're not negative, we just hate being on dialysis.
Look forward to hearing from you.
Title: Re: my story (very short version)
Post by: Poppylicious on December 15, 2011, 02:20:46 PM
 :welcomesign; Joost!

Hope you're enjoying your pre-transplant testing! 

 ;D
Title: Re: my story (very short version)
Post by: lmunchkin on December 15, 2011, 04:00:40 PM
Hello &   :welcomesign;  Joost!  Hope you find comfort and answers here!  Sounds like youve been through the tethers.  People here will get you through it!

again, welcome & God Bless

lmunchkin
 :kickstart;
Title: Re: my story (very short version)
Post by: willowtreewren on December 15, 2011, 04:55:37 PM
Hi, Joost!

 :welcomesign; to IHD!

It sounds like the process for getting listed for transplant is as rigorous in Belgium as it is in the USA!  :bow;

Plenty to learn here. I'm looking forward to hearing more from you. I worked with a lovely lady from Belgium for a while.  :2thumbsup;

Aleta
Title: Re: my story (very short version)
Post by: kellyt on December 15, 2011, 07:14:51 PM
Hi Joost!  You sound like a hoot!  :2thumbsup;    What a great attitude.  I can't wait to hear more from you and follow you through this journey.  I hope you can get a kidney!      :waving;
Title: Re: my story (very short version)
Post by: lou on December 16, 2011, 12:58:42 PM
hi joost, great to meet you  :waving; :waving;
Title: Re: my story (very short version)
Post by: Deanne on December 16, 2011, 03:41:41 PM
 :welcomesign; Joost!

Why do they want to remove your native kidneys?
Title: Re: my story (very short version)
Post by: Joosthaegeman on December 17, 2011, 08:43:06 AM
Because I am still leaking high amounts of protein on 250ml urine 10g!

greetings to al :-)
Title: Re: my story (very short version)
Post by: Ang on December 26, 2011, 10:34:39 PM
 :welcomesign;