Transplant Evaluation

Are you waiting to receive a transplant? Share your kidney transplant experience.
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Please note: This site contains user-submitted content, comments and opinions, and they do not necessarily reflect the views and opinions of the PKD Foundation. Information shared in the forums is not medical advice. Please consult your nephrologist or health care team for information and guidance specific to your health.
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Posts: 59
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Transplant Evaluation

Postby Moderator » Tue Oct 15, 2013 2:13 pm

We get lots of questions about kidney transplants. Very frequently, patients need to know where to start! Let's talk about experiences with the evaluation process.
To learn more, visit pkdcure.org! If you have questions, please email education@pkdcure.org.

bestdayever

Re: Transplant Evaluation

Postby bestdayever » Thu Oct 17, 2013 11:33 am

Hopefully you have a good relationship with your nephrologist, they will ultimately be the one who recommends that you start testing to get onto the list. The evaluation process takes time, there are lots of different areas that have to be in healthy condition in order to get onto the list. There are also some conditions that will keep you from getting listed, at least until they are resolved.

bestdayever

Re: Transplant Evaluation

Postby bestdayever » Tue Nov 19, 2013 6:28 pm

A great place to look at different hospitals and their statistics is the UNOS web site. It has the details (blood types, cause, how long folks waited, age, disease etc) for every single hospital in the USA, sometimes it's a bit tricky to find exactly what you want to know but I would be willing to help if you need it.

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Re: Transplant Evaluation

Postby risa simon » Wed Dec 25, 2013 9:14 am

Are you considering a transplant? Do you know the difference between getting a transplant before you require dialysis? The best thing you can do right now is learn as much as you can and be as proactive as you can. (Check all the Webinars on PKD's website, especially the one called "The Empowered PKD Patient." Let your nephrologist know your wishes and desires EARLY on and encourage open discussions about your referral to a transplant center so you can do all that you can to avoid the need for dialysis. There are centers that allow you to "self-refer" for an evaluation, if you are getting resistance from your nephrologist like I was and many others have experienced. Never forget that no one is going to care as much about you and the quality of your life than YOU do. It's up to you to secure your best life possible. Don't let another day go by without becoming you own best advocate.
Risa Simon, Volunteer Phoenix Chapter Coordinator
Patient Mentor, Speaker, Author: "Shift Your Fate: Life-Changing Wisdom For Proactive Kidney Patients"
http://www.amazon.com/gp/product/0578113635

wacookie

Re: Transplant Evaluation

Postby wacookie » Sat Sep 13, 2014 8:48 pm

I understand from a friend that the rules for going on the transplant list changed as of Jan 2014. Anyone have info on that? She was just evaluated at Yale with GFR of 26 and referred by her neph

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Joined: Fri Oct 11, 2013 11:38 am

Re: Transplant Evaluation

Postby Moderator » Thu Sep 18, 2014 2:50 pm

Thank you for your post! Here is a link to a brochure from United Network for Organ Sharing (UNOS), Questions and Answers for Transplant Candidates About Kidney Allocation. Hope this helps!

http://www.unos.org/docs/Kidney_Brochure.pdf
To learn more, visit pkdcure.org! If you have questions, please email education@pkdcure.org.

Andy

Re: Transplant Evaluation

Postby Andy » Thu Oct 30, 2014 10:53 pm

Does anyone know about number of transplant centers you can be listed on? I live in Honolulu and will get listed here but they just reopened their transplant center at queens medical center. I called ucla transplant center to start evaluation process and will meet with them next year. My gfr is 24 and they said it was early but would still meet with me next year to begin the consultation and evaluation. They told me to check with my insurance that I could get listed at more than 1 transplant center and was informed I could since some hospitals are in-network for my insurance. I was also going to look into mayo clinic in Arizona as well if I'm able to get on as many lists as possible. Has anyone done this or have info regarding multiple lists? Thanks!


Last bumped by Anonymous on Thu Oct 30, 2014 10:53 pm.

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