Started hemodialysis When do you get put on the transplant list?

Posted by ginal @ginal, Apr 11, 2018

Hi, I started Hemo Dialysis 3 weeks ago. My question is when do you usually start all the tests and get put on a transplant list?

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Rosemary, Volunteer Mentor | @rosemarya | Apr 13, 2018

In reply to @kanaazpereira "Hello @ginal, Welcome to Connect; I'm so glad you've joined us. We have so many incredibly..." + (show)

@ginal, I respect your opinion about your daughter donating her kidney to you, And I especially admire your determination to find your way in this maze of uncertainty. I do want to share the following link in case you and daughter would like to look at it.
The Transplant PAGES contains information for all levels of a transplant journey.
https://connect.mayoclinic.org/page/transplant/
Rosemary

Rosemary, Volunteer Mentor | @rosemarya | Apr 13, 2018

In reply to @kanaazpereira "Hello @ginal, Welcome to Connect; I'm so glad you've joined us. We have so many incredibly..." + (show)

@dshaver, I hope that you feel the prayers that I am sending your way.
Also sending strength and hugs.
Rosemary

Rosemary, Volunteer Mentor | @rosemarya | Apr 13, 2018

In reply to @kanaazpereira "Hello @ginal, Welcome to Connect; I'm so glad you've joined us. We have so many incredibly..." + (show)

@mlmcg, @gaybinator, Do you have anything from your experience that might be helpful to @ginal about dialysis. and about getting listed for a kidney transplant? This is out of my own experience, and ginal is looking for someone to talk to and to learn from.
Thank you
Rosemary

dshaver | @dshaver | Apr 13, 2018

In reply to @kanaazpereira "Hello @ginal, Welcome to Connect; I'm so glad you've joined us. We have so many incredibly..." + (show)

Thank you Rosemary,
My symptoms continue as I wait. I have insomnia now. It might be from the worry. My nephew was tested for Paired Donation a week ago. He hasn’t heard anything. I continue to wait as patiently as possible.

JK | @contentandwell | Apr 13, 2018

In reply to @kanaazpereira "Hello @ginal, Welcome to Connect; I'm so glad you've joined us. We have so many incredibly..." + (show)

@ginal My daughter and son both volunteered to be a living liver donor for me. I very much discouraged them but my daughter persisted. I finally got her the info at her constant urging, they said she could go through the tests at one of the NYC transplant hospitals but then it did not work out.
I really did not want my son to because I felt it would be very disruptive to his career since he would have to come east for about a month (he lives in CA) but I know if he thought I was absolutely urgent he would have been on the next plane east.
I would suggest that you let your daughter get tested at some point and then if it does become urgent she will be ready to go. She can be tested and you can still try to wait for a cadaver donor. I know the wait for kidneys is very long though.
JK

Rosemary, Volunteer Mentor | @rosemarya | Apr 14, 2018

In reply to @kanaazpereira "Hello @ginal, Welcome to Connect; I'm so glad you've joined us. We have so many incredibly..." + (show)

@contentandwell, Thank you for sharing your very personal experience.
When I was transferred to Mayo, and only listed for a liver transplant, some of my family members asked about getting tested to be donors. However. since I was so critical, they were told that there was not enough time for that. Soon after that, I was listed for both a liver and a liver and a kidney. I, too, had a deceased donor.
Rosemary

Rosemary, Volunteer Mentor | @rosemarya | Apr 14, 2018

In reply to @kanaazpereira "Hello @ginal, Welcome to Connect; I'm so glad you've joined us. We have so many incredibly..." + (show)

@dshaver, I'll continue to pray. Rosemary

Charlie | @ca426 | Apr 15, 2018

In reply to @kanaazpereira "Hello @ginal, Welcome to Connect; I'm so glad you've joined us. We have so many incredibly..." + (show)

I have done both, and peritoneal dialysis is easier but you have to be very carful because you can get peritonitis, which is very painful and you get very sick.