I guess I forgot to intruduce myself

TheKatGamer

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« on: January 19, 2016, 12:33:25 PM »

I guess I forgot to introduce myself when I first got my account on here. So my name is Daniel I am 16 I had gotten sick last year with a disease called Wegener's Granulomatosis it had attacked my kidneys my lungs and sinuses..(I was in the hospital for about a month) My lungs and sinuses recovered just fine but left me with kidney failure with about 11% function (now its around 8%) When I first got out of the hospital I could barley walk or talk and was in a wheelchair for a while. For my 16th birthday I got a surgery for my av fistula which went well and is working great. Now I am doing a better physically I can walk just fine and talk fine. Now I am just waiting until I can get a transplant (We are looking for a live donor while I get some vaccines I need to have before the transplant) So ya that's the basics of it if you have any questions go ahead and ask away!


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cassandra

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When all else fails run in circles, shout loudly

Re: I guess I forgot to intruduce myself

« Reply #1 on: January 19, 2016, 01:22:34 PM »

Welcome to the site TheKatGamer

I'm sorry to hear you have to go through this already, but I'm wishing you all the luck in the world with your transplant, and am so pleased you found our site.

Love, and luck, Cas


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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

still on waitinglist, still ok I think

Charlie B53

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Re: I guess I forgot to intruduce myself

« Reply #2 on: January 19, 2016, 02:50:46 PM »

Welcome to IHD.

Among the member here you will find a number that have started Dialysis at an early age, like you and have long been shall we say, entrenched in living with the disease.

Some of them still manage to finish their education, and have productive jobs.

Feel free to post anything you wish to share, questions you may have, or will have, that may help you to better understand what is happening, and hopefully help you to better cope with the reality of Dialysis.

Your with some of the greatest people on the planet.

Take Care,

Charlie B53
Moderator


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SooMK

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Re: I guess I forgot to intruduce myself

« Reply #3 on: January 20, 2016, 05:14:00 AM »

Welcome Daniel! I hope that some of the exciting new work being done on kidney failure will be available for you in the not too distant future.


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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.

Vt Big Rig

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Re: I guess I forgot to intruduce myself

« Reply #4 on: January 20, 2016, 06:59:30 AM »

Welcome.

My usual greeting is glad you found the site but sorry you had to......

Sorry you got hit with this a such a young age. With me it was partly (?) due to self destructive behavior.

I believe transplant lists are geared more towards the younger (appropriately) so I expect you chances are good. Best of luck


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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months, New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help

del

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