Any double donors out there: liver and kidney?

Posted by rebekahinvt @rebekahinvt, Aug 30, 2019

Hi - just wondering if there are folks who have donated both part of their liver as well as a kidney. I'm about 6 weeks post liver donation and was told to wait at least a year before proceeding with a kidney donation. Anyone already done both?

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@keggebraaten

@cehunt57 Thanks to your daughter for her donation! I am always in awe of people who make that choice to donate and are so selfless in their decisions. Back when she asked about living liver donation/paired exchange, Mayo required liver donors to have a significant relationship with their recipient. That has changed, and now we have a liver nondirect donation program as well as a liver paired exchange program. Since the liver and kidney recipients are on separate lists, I don't know if it's possible to donate a kidney in exchange for a liver, but we definitely now allow liver patients to donate to people they don't know. You all can find more info about these programs here: https://www.mayoclinic.org/tests-procedures/living-donor-transplant/about/pac-20384787.

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@danhoe, I invite you to view this post that addresses your question about living donation to a nonfamily member.
You can go there directly by clicking the "In reply to..." that shows at the top of this message.

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@rosemarya

@danhoe, I invite you to view this post that addresses your question about living donation to a nonfamily member.
You can go there directly by clicking the "In reply to..." that shows at the top of this message.

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Rosemary, thank you. I had read that and filled out the online forms and the transplant team that did my kidney transplant donation said they only would do the screening if I had a recipient relationship. My heart is a little broken thinking I can't help someone in need. Maybe someone will come to my attention and it will all work out as it should.
Tammi🌼

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@danhoe

Rosemary, thank you. I had read that and filled out the online forms and the transplant team that did my kidney transplant donation said they only would do the screening if I had a recipient relationship. My heart is a little broken thinking I can't help someone in need. Maybe someone will come to my attention and it will all work out as it should.
Tammi🌼

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Tammi, You have taken the steps that were needed to get this answer. I can tell that you are disappointed, but it sounds as if the door is still opened for a possibility at some time in the future. One thing that I believe, and have both witnessed and experienced, is that the timing is out of our control. I hope that your broken heart can be comforted with knowing that you have seriously considered and requested a screening. And who knows what the medical advances will allow at some time in the future.

I know of people who say they might consider being tested to be a living if a family member needed one. However you are inspired to donate, not once but twice, as an altruistic living organ donor.
What motivated you to donate a kidney a little over a year ago? And what is your motivation/desire to participate in living liver donation, now?

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Rosemary, I became aware of someone's family member that needed a kidney. She was a mother trying to raise 3 boys while being on dialysis and declining health. Although I didn't know her, I was moved to seeing if I could be her match. I was not her match but I learned I could give my kidney in her honor through the paired chain so I went ahead and donated to a person I have not met but did receive a card from after the transplant. The mother who I named has recently received her transplant and is doing well. Someday I would love to meet both of those people. I am so appreciative that I got to be a piece in someone else's journey to better life.

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@danhoe

Rosemary, I became aware of someone's family member that needed a kidney. She was a mother trying to raise 3 boys while being on dialysis and declining health. Although I didn't know her, I was moved to seeing if I could be her match. I was not her match but I learned I could give my kidney in her honor through the paired chain so I went ahead and donated to a person I have not met but did receive a card from after the transplant. The mother who I named has recently received her transplant and is doing well. Someday I would love to meet both of those people. I am so appreciative that I got to be a piece in someone else's journey to better life.

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@danhoe, Tammi, Thank you for sharing your story. Thank you for sharing your kidney. Whenever I meet a living donor or family member, they are always upbeat about the experience. I think that it would be an amazing experience to one day meet face to face with the people that you have 'paired' with. I hope it happens at an appropriate time for all of you.

Tammi, Would you consider sharing your story in the transplant discussion -Organ Donation and Transplant: What is your story?
I have included story suggestions in the overview of the discussion.
https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

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@rosemarya

@danhoe, Tammi, Thank you for sharing your story. Thank you for sharing your kidney. Whenever I meet a living donor or family member, they are always upbeat about the experience. I think that it would be an amazing experience to one day meet face to face with the people that you have 'paired' with. I hope it happens at an appropriate time for all of you.

Tammi, Would you consider sharing your story in the transplant discussion -Organ Donation and Transplant: What is your story?
I have included story suggestions in the overview of the discussion.
https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

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Rosemary, I will check out your link. I am very happy to share my story. I believe sharing and advocacy for living donation will help others who are wondering about the process make informed designs and take away some of the worries.

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@lwilkey

Hi Rosemary!

Sadly, that chain that I was a part of fell apart, and so that surgery did not happen. I have since been slotted into at least two other chains that also fell apart; however, I am currently part of a chain that *SHOULD* have surgery this coming Thursday, April 15th! I had blood work done this past Thurs and it was shipped to the recipient's transplant center in NYC, so as long as I don't get the bad news that we are not suitable matches for each other between now and Thurs, then we should be good to go (prayerfully)! I have a pre-op telehealth appt with my surgeon and a pre-op Covid swab tomorrow morning, and then I have to self-quarantine for the 72 hours before surgery (which will take place in Peoria, IL). I'm excited and praying that THIS chain holds together, and I covet all of your prayers, too, for good results for all involved!

Sending love to all!

-Laurie <3

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@lwilkey Laurie, I have had you on my mind. I hope that this message finds you doing well.
Were you able to proceed to the transplant surgery that was scheduled for April?

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@rosemarya

@lwilkey Laurie, I have had you on my mind. I hope that this message finds you doing well.
Were you able to proceed to the transplant surgery that was scheduled for April?

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Hi Rosemary! YES! My local intended recipient, for whom I was not a good physical match, and I each had our surgeries on April 15th. her new kidney came from someone in Cali, and mine went to someone in New York. So far, she has lost over 22 lbs of fluid that her new kidney has been working hard to rid her of and she feels amazing (other than lots of med-tweaking). I have felt pretty good, too, most of the time, except for my back. My back sometimes feels like it's going to snap right in half, it hurts so much. I don't know if this is normal or not, but I'm praying it will go away soon, as I don't like to take a lot of meds. I'm seeing my surgeon on Thurs 5/6, so I plan to ask him! I will say this, donating my liver was A LOT easier and less painful than donating my kidney has been! <3 <3

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Laurie, wonderful update. I hope your back pain goes away soon and your surgeon can give you some helpful advice. Thank you for being a donor twice.

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@danhoe

Laurie, wonderful update. I hope your back pain goes away soon and your surgeon can give you some helpful advice. Thank you for being a donor twice.

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Thank you so much, Tammi! And I hope so, too! <3

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