Approved donor, concerns about transplant center, and questions about multiple l

[JavierCruise]

About a year ago, my sister asked if I would consider being a kidney donor. I agreed and began the evaluation process. In April I completed the final battery of tests, and after meeting some additional requirements related to my blood pressure, I was approved as a donor in August.

We then tried to schedule the transplant for September. That's when we learned that my sister had not yet completed a test required for her to be approved as a recipient. I was honestly stunned. I had spent roughly six months completing donor testing and making the medical changes necessary to be approved, yet we had reached the point of scheduling before discovering that she had not been fully cleared as a recipient.

She completed the missing test, which identified a medical problem requiring treatment. That treatment has now resulted in an unavoidable delay of at least three months before she can undergo transplant surgery.

I had already developed concerns about the transplant center and how the process was being managed, so when this unexpected three-month window opened, I asked my sister to please use the time to explore another transplant center where we might both feel more confident about the care we would receive.

She has consistently told me that there is simply no way for her to pursue another center. My understanding, however, is that multiple listing is permitted, so I don't understand why she couldn't at least begin an evaluation elsewhere while preserving her status with the original center. If insurance is the obstacle, I have also wondered whether Medicare might provide another option given her ESRD.

Things have become more complicated because she is now telling me that the original center will not continue evaluating any of her other potential donors because I am already an approved donor. In other words, if I am unwilling to commit to surgery at this particular center, I apparently need to formally withdraw before another family member can move forward with testing.

That doesn't make much sense to me either. I remain willing to donate a kidney to my sister. My concern is with the center, not with donating. I would very much like us to investigate another program before I agree to surgery.

For those of you who have been through this process:

Has anyone successfully pursued evaluation or listing at two transplant centers simultaneously? How did you go about it?
Can the recipient begin evaluation at another center without withdrawing from the original center?
Has anyone encountered a center that stopped evaluating all other potential living donors once one donor was approved?
If so, did the approved donor have to formally withdraw before the center would evaluate the next person?
Has anyone transferred an already-approved donor evaluation to another transplant center, and how much testing had to be repeated?
If you were uncomfortable with the transplant center but still willing to donate, how did you handle it?

I'm not trying to delay my sister's transplant. Quite the opposite. I'm trying to understand what options actually exist so that she can continue moving forward while I can feel reasonably confident in the medical team that will be performing major surgery on both of us.

[Clark]

Best wishes as you try to navigate the admin issues complicating an emotionally charged situation. Your questions and my responses inline:

Has anyone successfully pursued evaluation or listing at two transplant centers simultaneously? How did you go about it? This is unlikely, as one donor at a time at a transplant center is how insurance handles cost containment. My spouse and I started on our path to donate 25 years ago, and we had to decide who would go first.

Can the recipient begin evaluation at another center without withdrawing from the original center? Yes, recipients can list at multiple centers, but I don't know about how costs are handled.

Has anyone encountered a center that stopped evaluating all other potential living donors once one donor was approved? This should be transparent among all candidates, if all have come in for the initial blood crossmatch and expressed an in person intention to donate if eligible and compatible. As I said above, only one among this group is going to proceed to the more expensive, invasive, time consuming tests until either disqualified or approved. Once approved, that person can change their mind. The surgeons call this rescinding, but I've pushed back to them that rescision can't happen until the gift is actually given, and consent isn't truly given until the general anesthesia kicks in. If that happens, another candidate can start on the path.

If so, did the approved donor have to formally withdraw before the center would evaluate the next person? See above, "formally withdraw" would be withholding consent at that point.

Has anyone transferred an already-approved donor evaluation to another transplant center, and how much testing had to be repeated? I've heard of donor candidates (and their recipients) moving to another center, but every test for both would be repeated at the new center. For legal liability and for the transplant committee of the new hospital to approve, they'd want all their own tests. I'd be amazed to hear otherwise.

If you were uncomfortable with the transplant center but still willing to donate, how did you handle it? I had my own qualms about some of the intake procedure, but I provided my honest thoughts any time I felt it important to do so. It caused a good bit of friction at times, but we worked things out. Interestingly, my outspoken constructive criticism is why I was nominated to serve the OPTN in the various ways I have since then. The transplant center should be providing you access to a donor advocate to talk this over with, knowledgeable about your specifics but unrelated to the transplant team. A caveat: Ask everyone you talk to what the nature of the conversation is, is it going verbatim in notes the whole team will see, paraphrased (meaning with the author's opinion changing it), or privileged, only shared if appropriate legal authority is brought to bear. Lack of transparency about this, and incorrect paraphrasing of some of what I said was central to much of the trouble I had along the way. All eventually resolved, and I've heard things have changed. Again, best wishes.