Transplant List Process Time

Posted by tomkrush @tomkrush, Oct 22, 2019

Last month when my GFR dropped to 22 my Nephrologist sent a referral to Mayo Arizona to begin preparation for a preemptive kidney transplant. Last week my GFR dropped to 20 and new blood work this week once again showed 20 which I believe Mayo is in receipt of.
I am very blessed to have a number of family members who are willing to be tested as donors. How long does it take before I can begin my testing and the testing of my donors? My GFR is dropping quickly and I do not want to begin dialysis.

@tomkrush It is never an easy situation to be in, as you consider dialysis and kidney transplant options. My suggestion is to start with your nephrologist, find out for sure that you have been referred to Mayo in AZ. Each transplant center seems to have their own criteria for transplant whether it is live donor or cadaver. They will be the best ones to answer your question. Also check with your doctor to see if you are going to be listed on a transplant list, as typically that starts at 20%. Sometimes the process for testing takes a while, and while you may have friends or family that are willing to step up and donate, they may be precluded by their own medical conditions. I think it is wonderful that you have those who have expressed that desire, to donate to you, don't you? I hope that you will post and let us know how the procedures go. How are you feeling right now? Sometimes we do have to go on dialysis before a transplant, and that is certainly not the end of the world! It would be good for you to get educated on the different types of dialysis there are, just on the chance that you have to do that.
Ginger

Liked by joanaiken

REPLY

@tomkrush, I experienced a acute kidney failure and did undergo dialysis up until my transplant. I want to check in and ask how are you and your kidneys doing?
Will you be listed for a kidney transplant?
Here is a link to information about Living Kidney Donation in the Living Donor and Recipoent Toolkits.
https://connect.mayoclinic.org/page/transplant/

Eligibility for Liver or Kidney Transplant
https://connect.mayoclinic.org/page/transplant/newsfeed-post/eligibility-for-liver-or-kidney-transplant/

What questioins would you like to ask?

REPLY

@tomkrush, I am sending a virtual, "Thinking of you" greeting. In our most recent communication here, you were beginning a possible dialysis treatment and kidney transplant possibility. I realize from my own experience that those are both frightening situations. How are you doing with all of this?

REPLY

I started at Mayo when my GFR was 23. Had a few people tested, denied. I’m now at 13 and dropping. I’ve been on the list, accrued time of over a year. They are not always quick to test “your people“. Sometimes it’s “your person” that is putting off testing. They can only test one person at a time. It’s frustrating. Your people have to be diligent and call often to make sure things are happening.
Not being able to communicate with the donor team is also difficult.
Get “your people” to fill out questionnaire NOW and get going!
I now have to prepare for dialysis. I truly thought I’d be able to avoid this.
I’m still getting out my plea for an altruistic donor. It’s not as easy as it seems.
Good luck!!

REPLY

@tomkrush and @morty don’t give up hope. I have stage 4 CKD. I was approved, accepted and listed for kidney transplant when my GFR was 19 (in 2016). Since that time it has bounced from 14 – 42 and is currently 23. My listing was changed to inactive. All this time I’ve also been looking for a living kidney donor. Thus far I only have a handful of people that would even consider donating. Only 1 of them made it through the health questionnaire but was deferred after testing. When my GFR was 14 and I went to learn about dialysis the nurse educator told me to think of dialysis as a bridge to get to where I hope to end up (transplant). I’m a Christian and I believe that God has a plan for me. I hope and pray that it includes a kidney transplant. I’m also trying to trust God’s timing and that if this plan also includes dialysis, it will be ok. Prayers for all the best for both of you.

REPLY
@morty

I started at Mayo when my GFR was 23. Had a few people tested, denied. I’m now at 13 and dropping. I’ve been on the list, accrued time of over a year. They are not always quick to test “your people“. Sometimes it’s “your person” that is putting off testing. They can only test one person at a time. It’s frustrating. Your people have to be diligent and call often to make sure things are happening.
Not being able to communicate with the donor team is also difficult.
Get “your people” to fill out questionnaire NOW and get going!
I now have to prepare for dialysis. I truly thought I’d be able to avoid this.
I’m still getting out my plea for an altruistic donor. It’s not as easy as it seems.
Good luck!!

Jump to this post

Best wishes, Morty. I can truly empathize with you, as I am in a very similar place. I also have been trying to avoid hemodialysis and sharing with others has been so helpful. Have been on the list for 6 months with GFR ranging from 16- 21. My chances for a living donor seem slim right now, Hang in there, as it is always worth it. You are worth it. And it is a transition treatment.

REPLY
Please login or register to post a reply.