Kidney transplant - The Journey from the Donor's Side

@beckyjohnson my first transplant experience was in 2003 at the U of MN. My father-in-law needed a kidney. My daughter ended up being his living kidney donor. At that time she was a 19 year old college student. She completed her pretransplant evaluation in March during her spring break and they had their transplant surgery in early April that year. (Both of them were at my house under my care and keeping during that journey.) My daughter missed a week or two of school after surgery but profs & friends were very accommodating for her to keep up from my house. She went back to school in April, finished the school year and began a grueling summer job. My point is, much of the journey involves “hurry up and wait” but things can move quickly once you go through the hoops. Did you clear the health questionnaire and have you been able to move on to donor evaluation scheduling? As you do that there will be more waiting involved before you find out the final answer. If you get the go ahead, it will be doable!

@cehunt57 Yes I did clear the donor questionair. My transplant coordinator is working on getting the 24 hour blood pressure cuff... which I think will be sent to me. She is also working on getting back to back 3 days of testing the last week in June. Your daughter is a very brave & loving lady to give up a kidney at such a young age. What a blessing she is - an earth angel for sure.

@beckyjohnson yes I agree, but I am biased. That was 15 years ago. Now I have CKD and will be needing a kidney. That girl already donated one to her grandpa but she contacted Mayo wondering if she could donate part of her liver to someone on my behalf in exchange for a kidney for me! She was trying to take the paired donation exchange principal to a whole new level and thinking outside of the box! It was a good and generous intention but is not how they roll at Mayo. There are reasons why Mayo deems this would not be a good option. So this daughter of mine is 34 now, has completed college & grad school. Has worked/is working at various careers, is married, is mom to 3 of my granddaughters and is currently attempting to launch an endeavor to be a surrogate mom for a couple that can’t have a child biologically! She is a testimony of what can be done by a living kidney donor.

Has anyone heard of going from an altruistic donor to a directed donor? I've heard of directed donors becoming paired donors which is quite similar to non directed donors.

I don't know how it all works for sure but the social worker should be able to guide you through it.
From my understanding of a having a directed donor & going to a paired donation is this. You want to donate to Mary, you are not a match with her but are eligable (healthy) to donate. Joe is eligable to donate but doesn't match his buddy Steve. Mary is still your "person" but your kidney actually goes to Steve & Joe's goes to Mary. As long as you follow through with your donation, Mary is guaranteed a kidney. If you opt out, you & Mary are both out of the pairing (even if Joe matches her perfectly)
At any point during the process you (donor) can back out. The reason will not be given to the recipient. I don't see why you couldn't decide to go the route of a directed donor &/or a paired donation.

@mauraacro we have the same understanding. But I started out wanting to know who I donate to then learned from my coordinator that I'm considered an altruistic donor who likely will not know my kidney recipient. We may each sign a waiver to get in touch with the other but if one of us refuses then both of us will remain anonymous.
However my daughter personally knows a couple who have been married over 3 decades & he needs a kidney. This is how the question came about. The answer is apparently evasive since no-one knows of this type of change happening. But I'm going forward with the donation regardless of who gets my kidney.

@beckyjohnson I don't see why you wouldn't be able to switch from an altruistic donor to a named one, especially this early in the game.
Transplants are new to us but not to Mayo so I bet they just take the info given to them and run with it. If you add in new information, I'm sure they can figure out how to make it happen.

@beckyjohnson & @mauraacro I’m an organ recipient so maybe I shouldn’t weigh in here (deceased donor pancreas transplant). Now I’m waiting on a kidney transplant. I don’t know when and where it will come from. I’m listed, but am also looking for a living kidney donor. I am so grateful for my pancreas transplant. I had the opportunity to send a letter to the donor family to thank them, tell them about myself and extend an invitation for some follow up contact. This was done through a coordinator/social worker. I never got any response back. I’m just saying most recipients would like to meet &/or know something about the donor. It must be comfortable & agreeable for everyone involved. Mayo has so much experience with every kind of scenario I’m sure they will sort it out in the proper time and way for everyone’s best interest. What you are trying to do and have done is a tremendous thing. Thank you.

@cehunt57. Of course you should weigh in here! If everyone knew what was going on for both sides think of how much easier life would be.
I'm sorry that the donor's family didn't get back to you but am so glad that the donor chose to use the end of their life as a life saving method for others.
Good luck to you

@mauraacro Thank you for asking. My husband is having his surgery next week on the 21st, I am scheduled for the 25th. Although I was deemed a good match they found a better size match and I am now doing the paired donation. My husband's kidney is coming from Florida and I believe mine is going to Arizona. My husband is so ready to start feeling better!! We have been trying to get everything ready for our stay in Rochester, we have a duplex through Serenity House. We are nervous but excited for this journey. We have a great support system and have a bunch of family members coming down for the first week to help in any way.
Even though I don't post much, I have really appreciated reading about everyone & their experiences! I know I will continue to come to this discussion as we are going through this.