Any double donors out there: liver and kidney?

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

Hi Rosemary!

My back pain is getting much better now-- thank you! Yes, it was related to the surgery, but only indirectly: since I am normally a very active person, turns out that sitting around after surgery (because you kind of have to, at least 'til you heal up) was what was bothering my back. Once I'd healed up enough and felt well enough to move around more, my back began to feel better, thank God! I am actually running again already, four weeks post-op!

I did see my surgeon last week in person, but all of my future follow-up appointments will be via telehealth. I will be monitored by UNOS for two years post-op, just as I have been for the liver donation two years ago. And I'd be happy to share my stories!

Thank you so much for checking up on me!

-Laurie <3

@lwilkey
On behalf of recipients, donors, and donor families, Thank you for sharing your story in the Transplant Discussion: Organ Donation and Transplant: What is Your story?

Laurie, I salute you for the lives you have saved by your own gift of living organ donation, and for those who will be recipients because someone reads your story.❤

@rebekahinvt my daughter donated a kidney to my f-i-l (her grandpa) in 2003. Now I’m in need of a kidney myself. My daughter thinks outside of the box. She called Mayo to ask if she could donate part of her liver to someone on my behalf in exchange for a kidney for me. She was told:
1. A living liver donor & liver recipient need to be related in some way.
2. The paired donation exchange chain doesn’t work the way she proposed (across organs).
3. She would not be considered for living liver donation since she had already donated a kidney.
That’s our story. Perhaps things are different if the liver donation came first and then the kidney donation? Also various transplant centers establish different policies, criterion, rules & regulations.

@lwilkey, I hope that you are feeling relief from the back pain. If you don't mind me asking, Was it related to the surgery?

Will you have further follow-up appointments with the surgeon? What kind of monitoring will you need after the kidney donation? Do you still have follow-up monitoring after the living liver donation?

I also want to invite you to share your story when you are comfortable doing it.
https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

It is not as unusual as one might think. I know several liver donors who are now considering kidney donation. While it is true that many hospitals require that you know the recipient for your liver, I did lots of research and was pursuing those that allow for non-directed/altruistic donors. There are definitely far fewer hospitals that do living liver donor transplants, and even fewer that take altruistic donors. It has been my experience that there are fewer hospitals that have such restrictions for kidney donors. I am also narrowing my search to hospitals that participate in the kidney voucher program, as I do have a voucher recipient in mind. However, I would leave the decision about who gets my own kidney up to the hospital's transplant team. If you had a positive experience with your kidney donation, I would at least consider pursuing the liver donation (not sure if Mayo allows for non-directed). Good luck!

I am almost 1 year post altruistic donation of my left kidney in Az. The procedure and healing has gone so smoothly and I feel great! I decided I would love to donate part of my liver altruisticly as well. I was told I would need a significant relationship with a donor to do that. It breaks my heart because I have healthy organs and am willing to share and someone out there needs what I have.