Living Kidney Donor Graft Survival Calculator

Posted by 2gallonhabit @2gallonhabit, Sep 4 10:35am

Hi all. I was extremely fortunate to have found a living donor but since our blood types are compatible, we're entered into the Paired Exchange program.
I recently received my first offer and wondered how good of a match it was and whether I should accept it (ultimately I declined the offer).
As a result of the ensuing research, I came across this calculator – developed by the University of Michigan – that estimates graft survival time. While the information is directional at best (no calculator/statistical analysis can GUARANTEE anything), I think it's a great tool for comparing offers or – more realistically – comparing an offer to your IDEA of the "perfect" match.
The calculator is located here: https://kecc.shinyapps.io/SurvivalCalculator/
If anyone has any questions, ping me. My background is data analytics and I know enough stats to be "dangerous". Take care.

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

@2gallonhabit, I had not seen a Living Kidney Donor Graft Survival Calculator before. I had a deceased donor, and I was aware that my transplant surgeon was the one to decide if the organs that matched me were the best ones for me. Even on the day of the Call and surgery, my surgeon told me that the surgery would not be 100% certain until she inspected the organs ( I had a liver and kidney transplant) I am aware that I almost got the Call a couple of times before the organs were deemed unsatisfactory for me.

I'm unfamiliar with living donation, and with paired donation. So, if you don't mind, I have some questions if you are comfortable to answer. Is it a common practice for the recipient to make the decision about accepting a kidney from a living donor? How were you presented with the opportunity to choose? What was the surgeon's opinion? and Does this in anyway affect your standing on the waiting list for a kidney?

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Hi Rosemary. Finding information on Paired Match Living Donation from the recipient's point of view is extremely difficult so I can only present my circumstances.

When my transplant nurse told me about the match she said that the age of the donor kidney was at least 10 years my senior. In the research I'd done (I'm a data analyst by trade), studies indicated that an older kidney had a higher chance of graft failure (also, I was under the impression that they tried to age match). Hoping that a strong HLA match would offset the age of the kidney, I asked for additional information.

The donor coordinator forwarded that information to my transplant doctor and then we had a discussion about the match. Unfortunately, there was a 5 HLA mismatch (out of six). So while the match would have been 'sufficient' it wasn't necessarily a strong match. Based on my current health, recent labs and the fact that I'm not on dialysis, I decided to decline the offer. My doctor understood my concerns and did not disagree with my assessment of the situation – or decision. Following this conversation, the donor coordinator reached out and we established the match criteria that would be used for future matches.

So to answer your question about how I was presented with the opportunity to choose, honestly I wasn't. The donor kidney age concerned me and I needed more information to feel comfortable. I also brought up the question about how this would affect my chances for future matches i.e. would I be blackballed (my doctor had the same question) but it appears that is wasn't an issue. The only other experience I have with offer decisions is when my mother was waiting for her transplant. She was offered a Hepatitis kidney (deceased donor) but decided to turn it down and wait for another match (she was matched a couple months later). A similar situation occurred with a friend's brother.

Yes, declining a match is a risk. But I know it was the right thing for me to do in this situation. Before I made the decision, however, I talked with my (incompatible) donor to discuss my concerns. Her response was better than I could have hope for. She said that we only want to do this once so let's make sure it's the best match for you. Truly blessed to have such a supportive friend.

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@2gallonhabit, I am just checking in to see how you are.
I know that waiting for the Call can be an emotionally exhausting. Here is a discussion for anyone who is waiting for their "Call".

-Packing question: What did you have ready for "the call"?https://connect.mayoclinic.org/discussion/packing-question/

What are you doing to pass the time?

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No offense, I am not an authority all the variables involved in Kidney transplant, but this calculator can be misleading. example: it is the amount of matches that significantly matter (apart from good health of donor & recipient which are often reflective of lifestyle and genetics inherited) rather than the mismatch as per UNOS statistics on post kidney transplant survival.

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