Joosthaegeman
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Posts: 6
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« on: December 15, 2011, 12:37:40 AM » |
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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 .
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Rerun
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« Reply #1 on: December 15, 2011, 03:52:31 AM » |
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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  |
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Joosthaegeman
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Posts: 6
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« Reply #2 on: December 15, 2011, 05:32:32 AM » |
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what I forgot to mention is that I don't hate dialysis  I only have a problem with the fluid restriction... and I still have cravings for chips! I love chips |
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« Last Edit: December 15, 2011, 05:34:01 AM by Joosthaegeman »
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billybags
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« Reply #3 on: December 15, 2011, 06:07:26 AM » |
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Joosthaegeman 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. |
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Joosthaegeman
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Posts: 6
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« Reply #4 on: December 15, 2011, 06:44:34 AM » |
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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.
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Joe
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« Reply #5 on: December 15, 2011, 12:11:41 PM » |
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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.
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
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Poppylicious
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« Reply #6 on: December 15, 2011, 02:20:46 PM » |
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Joost! Hope you're enjoying your pre-transplant testing! 
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lmunchkin
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« Reply #7 on: December 15, 2011, 04:00:40 PM » |
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Hello & 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  |
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present. NxStage at home
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willowtreewren
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« Reply #8 on: December 15, 2011, 04:55:37 PM » |
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Hi, Joost! to IHD! It sounds like the process for getting listed for transplant is as rigorous in Belgium as it is in the USA!  Plenty to learn here. I'm looking forward to hearing more from you. I worked with a lovely lady from Belgium for a while.  Aleta |
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Wife to Carl, who has PKD. Mother to Meagan, who has PKD. Partner for NxStage HD August 2008 - February 2011. Carl transplanted with cadaveric kidney, February 3, 2011.  |
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kellyt
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« Reply #9 on: December 15, 2011, 07:14:51 PM » |
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Hi Joost! You sound like a hoot! 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!  |
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1993 diagnosed with glomerulonephritis. Oct 41, 2007 - Got fistula placed. Feb 13, 2008 - Activated on "the list". Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta. Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  |
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Deanne
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« Reply #11 on: December 16, 2011, 03:41:41 PM » |
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Joost! Why do they want to remove your native kidneys?
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Deanne
1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
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Joosthaegeman
Newbie
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Posts: 6
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« Reply #12 on: December 17, 2011, 08:43:06 AM » |
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Because I am still leaking high amounts of protein on 250ml urine 10g!
greetings to al :-)
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Ang
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« Reply #13 on: December 26, 2011, 10:34:39 PM » |
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live life to the full and you won't die wondering
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