Removal from kidney transplant listing

@kandyh,
I feel your fear and disappointment at your loved one's removal from the kidney transplant listing. In 2008 I was removed from the liver transplant list due to possible bile duct cancer (cholangiocarcinoma) that my local transplant team was unable to biopsy. In my situation, I was fortunate to have been referred, by my local liver transplant team, to Mayo Clinic in Rochester MN, where, over the course of several months, I qualified and was re-evaluated for my transplant (liver and kidney) in April 2009.

Your questions are going to be best answered by those who specialize in unique cases like yours.

Here is the link to Mayo Clinic Kidney Transplant Department. You can read about Mayo's program and find contact information to any of Mayo's 3 Campuses.

-Kidney Transplant Program
https://www.mayoclinic.org/departments-centers/kidney-transplant/home/orc-20203197
Kandy, Please keep in touch. I am hoping for only the best for your loved one.

Thank you. He started the qualification process with Mayo in Fl but halted it because things were going well close to home. With out dedicated donors it would be difficult to get to Jacksonville Fl for a deceased donor. But now we should follow through with them.

Kandy, I had a deceased donor, so I don’t know much about living donors. I want to ask whether the local anonymous donors would qualify or be eligible to donate at the Jacksonville Location?
How is loved one feeling? Is he/she on dialysis?

We don’t know. We have no access to talk to the donors but they are local so I would imagine that would be inconvenient.
Dialysis wipes him out and he sleeps for hours following dialysis. He is in his mid 30’s and life is literally on hold for him.

@kandyh my thoughts and prayers are going out for you and your loved one. If a transplant is meant to be it will happen at the right place & time and in the right way. I’m reminding myself of this also. I’m inactively listed at Mayo in Rochester, MN. I’ve been looking for a living donor since 2016 but haven’t found any offers.

Oddly enough about a 1/2 dozen people responded to a post on our local Nextdoor app. You might try that. We posted on Facebook and it was share to thousands and no response but our neighborhood social network responded.

We were also told by a couple of people that placing a sign on the back of their cars worked for them.

Unfortunately we do not know who they are and can not ask if they will follow him to a new location should he be accepted elsewhere.

I tried Nextdoor too. A couple of people responded but did not follow up / through when I gave them transplant center contact info for living donation. Facebook was useless. Some people responded wanting to sell their kidneys! Others were creepy phishing inquiries. I even printed a bunch of postcards stating my need and the transplant center info. I asked for help spreading the word and put these cards inside my Christmas cards. A few relatives and former “friends” reacted badly to this. Sorry, now I’m just fussing when I started out wanting to encourage you.

Sadly I ask our Church to make a request to the member and was told that people typically find donors among friends and family.
As if we hadn’t already done that.

Hi @kandyh 😊
It is nice to meet you! Are you concerned that Jacksonville is too far of a drive from your house if he received a deceased donor kidney? Approximately how far of a drive do you have to Jacksonville?

Hello. It is about t a 12-13 hour drive. We are in Houston, Tx. It is about the same distance to their Arizona location.