Kidney donation when you have an ectopic kidney

Posted by shockeysmom @shockeysmom, Nov 6, 2021

I want to donate a kidney to a friend with Polycystic kidney disease (PKD) who is in end-stage renal failure. All of the testing for the transplant was complete. I was a perfect match and easily passed all of the screenings and tests. But my CT scan showed that I have an ectopic kidney (left side). Based on that, the transplant center where we are is unwilling to do the transplant. I understand that they do not want to put me at any risk. However, would it be worthwhile to get another opinion at another clinic?

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Hello @shockeysmom, Welcome to Connect. You will notice that we added to the title of your discussion so that we can hopefully bring in members who may have experience they can share with you. Organ donations are truly the gift of life and I would like to think that if it were me I would want to seek another opinion and find out more about possible risks vs. success for a transplant. Here's some information that you might find helpful while we wait for other members to share their experience or other information.

- Successful Use of Ectopic Pelvic Kidney for Living Related Donation Technical Aspects and Literature Review:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5474263/

Since I wasn't able to locate members with an ectopic kidney, I thought I would bring in a few members who are familiar with kidney transplants to see if they may be able to offer any suggestions. @cmael actually received a kidney donation from her daughter. @sameeh123 has shared about kidney donation as well.

Do you have another institution that you would consider for a second opinion?

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@shockeysmom Welcome to Mayo Clinic Connect! I'm glad you found us, and your questions is definitely one I had to look up!

How generous for you to offer a kidney to your friend. As your friend may have told you, PKD can be such a cumbersome issue in relation to end stage kidney disease. There are several of my friend who have had that same diagnosis.

Can the transplant team choose to use the ectopic kidney as the donation organ? If not, why not? If they are unwilling to answer these questions, I would look at another transplant center for their opinion. Here is a scientific article that speaks to your same situation, showing an ectopic kidney should not be precluded as a possible organ for transplant! https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5474263/#:~:text=Ectopic%20pelvic%20kidneys%20can%20provide,who%20successfully%20donated%20his%20kidney.

Please let me know what you find out, okay?
Ginger

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@gingerw

@shockeysmom Welcome to Mayo Clinic Connect! I'm glad you found us, and your questions is definitely one I had to look up!

How generous for you to offer a kidney to your friend. As your friend may have told you, PKD can be such a cumbersome issue in relation to end stage kidney disease. There are several of my friend who have had that same diagnosis.

Can the transplant team choose to use the ectopic kidney as the donation organ? If not, why not? If they are unwilling to answer these questions, I would look at another transplant center for their opinion. Here is a scientific article that speaks to your same situation, showing an ectopic kidney should not be precluded as a possible organ for transplant! https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5474263/#:~:text=Ectopic%20pelvic%20kidneys%20can%20provide,who%20successfully%20donated%20his%20kidney.

Please let me know what you find out, okay?
Ginger

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Hi! Thank you for your response! As I only got this information on Friday, I am still absorbing it. I plan to speak to them again and ask them to run it by me one more time so I can understand why they are thinking they cannot perform the surgery. Also, I'll be receiving the actual CT report on Monday.
I live in the Dallas/Fort Worth area and my friend is a patient at a transplant center in Fort Worth.
I have already reached out to the Mayo transplant center in Phoenix, so I am hoping they would take a look at this case and give me another opinion. They may say the same thing, but I want to give it a try.
Thanks for the article too!

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@shockeysmom

Hi! Thank you for your response! As I only got this information on Friday, I am still absorbing it. I plan to speak to them again and ask them to run it by me one more time so I can understand why they are thinking they cannot perform the surgery. Also, I'll be receiving the actual CT report on Monday.
I live in the Dallas/Fort Worth area and my friend is a patient at a transplant center in Fort Worth.
I have already reached out to the Mayo transplant center in Phoenix, so I am hoping they would take a look at this case and give me another opinion. They may say the same thing, but I want to give it a try.
Thanks for the article too!

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@shockeysmom I will be curious to learn what the Mayo Clinic Phoenix has to say! Let alone what the current team has to say when you press them for more details or information.
Ginger

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