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@stillhopeful

Going into kidney failure and now looking to be a double transplant if I get one. MELD score is 24. I am still hoping. Been a backup three times and now considering visiting Mayo.

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Replies to "Going into kidney failure and now looking to be a double transplant if I get one...."

Hi, @stillhopeful and welcome to Connect.
I had my transplant at Mass General Hospital in Boston three years ago. My MELD was 28 at the time, which then was lower than they were generally transplanting at, it was usually in the low 30s. Since then I have noticed on reports that they are generally transplanting in the high 20s.
Have you heard of Compare Transplant Centers? It is run by a woman whose husband was waiting for a transplant and she researched thoroughly to find the transplant center where he could get a transplant the soonest. She then started doing that as a business and she helps others to find their best option. Mayo is of course a great option but it is not possible for everyone if they live a long distance from all of the three Mayos. You may want to look into both Mayo and getting help from Compare Transplant Centers.
Also, due to availability and compatibility some blood types can often get transplants sooner than others. My blood type is B and that did help I think. I suspect that being in need of two organs may move you up the list too, but @rosemarya knows more about that, she received both of those organs simultaneously from one deceased donor.
Please keep in touch and let us know how things are going for you and if you have chosen a different center. You can be listed at more than one. If I recall you cannot be listed at more than one per region.
JK

Hi, @stillhopeful. I am hearing you and i am hoping along with you. As @contentandwell has shared, I am a liver and kidney recipient. MELD scores – I never paid much attention to because I felt bad enough to know that I was sick. One just had to look at me and know that I needed a liver. On the other hand, my kidney failure came on suddenly. I needed dialysis to sustain me until i got a transplant.

Do you mean that you were called 3 times as a back-up for an available organ? I cannot imagine that, although I have heard other people share that they, too were sent home after being called. I did learn after my transplant that several organs were turned down for me because they were not thr right ones for me. How far do you live from the transplant center? I only was 7 blocks away so perhaps that is why there was no call.
What are your doctors saying about the failing kidneys? Sometimes kidneys "come back" as a result of a liver transplant. Do you think that they are expecting this outcome?

-If you have questions about a second opinion, you will find a Blue Appointment box at the top right corner of this page. That is where you will locate phone contact as well as online contact with any Mayo Campus.

– Here are some discussions where other members discuss their own transplant journeys and the hurdles that they are facing and have faced. Won't you join us? Just click the link that I have provided.
-It's not all about the MELD Score
https://connect.mayoclinic.org/discussion/its-not-all-about-the-meld-score/
-Liver transplant support group
https://connect.mayoclinic.org/discussion/liver-support-group/

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