"What is the quality of your "match"?"

Posted by hello1234 @hello1234, Sep 6, 2022

Hi Everyone, 😊
My local nephrologist asked me for information on the quality of my match with my donor. He said normally this is supplied in a packet by the transplant center when they transfer the patient out of their care to the local provider. It normally includes PRA Panel Reactive Antibody information, HLA Mismatches, etc. Did you or your local specialist receive information like that about the quality of your match with your donor? Do you know the quality of your match?

Interested in more discussions like this? Go to the Transplants Support Group.

l0lag0lag0b3 | @l0lag0lag0b3 | Sep 10, 2022

In reply to @cehunt57 "I had a pancreas transplant nearly 17 years ago. It was not at a Mayo transplant..." + (show)

@cehunt57

I had a pancreas transplant nearly 17 years ago. It was not at a Mayo transplant center. At the time, the coordinator told me there was an organ available with a 3 out of 6 match. Nothing was said about the “quality” of the match or anything as detailed as what @estrada53 provided above. There was no such thing as a portal. I asked the coordinator my all time favorite question “if it were you, would you do this?”. She responded “yes, this is a good match”.
The pre-transplant evaluation seemed great at the time. I was thrilled with the transplant itself. Post transplant I was followed with labs to watch for signs of rejection. These were decreased over time from daily to once every three months. I felt I was being followed pretty well (for about 6 months to a year). Then I realized that my coordinators had been changed with no notification. One of them wouldn’t even tell me her last name or contact info. They did not know who I was, where I was from, who my local providers were or even what kind of transplant I had had! I had 3 lab tests in a row that showed that my immune suppression was undetectable. This didn’t seem right at all and I had to contact them to ask if a dose change was in order. When my 1 year post transplant anniversary approached I figured I must be due for a follow up or check up of some sort. I had to contact the center to inquire about it. They did not know what I was asking or why. I was told they could schedule an appointment for me if I wanted. A post transplant biopsy wasn’t a thing at all. I’ve never had one!
Fast forward to more recent times. I will need dialysis &/or a kidney transplant at some point. I have switched to Mayo in Rochester. There is no comparison between the pre-transplant evaluation there and the previous transplant center (so thorough and comprehensive). I expect the transplant itself and follow up care (when the time comes) will far exceed my previous transplant experience in quality.

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At times I have felt that medicine is a business ( I have no inhibitions of making this statement). To find a truly altruistic entity is not easy but there are lot of good doctors / good hospital centers do exist. We have somehow come across them thru' blogs or references or reading.
My wife & I have experienced horrible scenarios prior to the transplant .. I cannot state them here..but whenever I have had a medical encounter.. I have always taken my wife along to ask questions too.. and felt that 2 heads are better than one & keeps the opposite side alert.
Hate to say this I had my transplant at a very reputable transplant center.. but I never saw the transplant coordinator in person !! .. whereas I met all the doctors and supporting staff in person who were involved in my transplant and felt they all were truly altruistic and personally thanked them all of them.

JK | @contentandwell | Sep 10, 2022

@hello1234 If that info is on the portal I did not view it at the time of transplant. It's been six years now so I suppose I could go back and find it but I know that my match was basically perfect. My transplant surgeon would tell me nothing about my deceased donor, not even the gender, but when I wrote to the family of the donor they wrote back and were very forthcoming with info.

My donor was a 34 year old young woman who died due to an asthma attack. She was very healthy other than asthma, exercised, lifted weights, and lived a healthy life. She was the same blood type as me and basically the same size. I have not had a single problem related to my transplant. I feel incredibly fortunate to have had such a problem free transplant.
JK

hello1234 | @hello1234 | Sep 10, 2022

Thank you @contentandwell
@l0lag0lag0b3 @cehunt57 @estrada53 and @windwalker
You all gave me such excellent information about your match and experience. I really appreciate it. Now, I feel better equipped to ask some intelligent questions at my next visit.
I can always rely on my Mayo Connect transplant family for wonderful support. Thank you all for helping me figure this out!