my dad's progression has me worried about my future

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Regular Member

Date Joined Sep 2010
Total Posts : 381
   Posted 10/19/2010 10:53 PM (GMT -6)   
my dad always told me it would be a long time before he needed a transplant... but he's been going through all the steps recently of trying to find a donor. I was diagnosed with ADPKD (same as he has) when i was in 10th grade. We know i'd had it long enough for it to spread to my pancreas, but weren't sure how far along i was. In ultrasound pics they can only see two or three big ones, but i have horseshoe kidney, many more were visible on the CT scan, and i experience a lot of pain from it. As my dad keeps going through this process, i'm worrying more and more about my future. Those with horseshoe ADPKD are more likely to go through kidney failure earlier, and my dad just turned 50 and doesn't have the horseshoe kidney.

i just worry that there's a time limit on my life and that with all my other health problems, we won't be able to find an acceptable match or i won't be eligible for surgery when the time comes. my best friend finally got to the top of the transplant list and was told she wasn't healthy enough. she went through dialysis and everything and she's my source of strength, but at the same time, i worry that we'll lose each other. even worse, i worry that i'm losing my dad and he doesn't want to tell me because he's afraid i'll panic... problem is, i'm panicking because he's not being open with me...

Regular Member

Date Joined Sep 2008
Total Posts : 457
   Posted 10/20/2010 5:46 PM (GMT -6)   
No parent wants to worry their child. We think we are supposed to take care of our children, not the other way around. I worry more about me getting seriously sick and how my children will handle it than I worry about my own health. I passed down kidney disease to both of my girls. It was heart breaking when we found out, but I vowed it wasn't going to rule our lives. Ask your dad to be straight with you, he may welcome the honesty. Try not to worry about the future, no one knows what it will hold for any of us.

My dad had open heart surgery and not to long after had a transplant. It went extremely well with not one rejection. So one never knows........

Dx'd with Crohns 1984
Polycystic kidney disease in 1996

Bowel Resection 2006, Now on Asacol, Imuran, Folic acid, B-12 injections and Enalapril.
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