donor issue

[Bax509]

I've been on the list since 5/19. My brother in law offered to get tested a year ago. He did so and is a match. Immediately after testing (December), he said he had family issues and then of course there was/is Covid! Long story short, he is still saying (as of today) "I'm interested but I can't commit right now". Knowing some of his barriers have been beyond anyone's control does not make the wait easier. My first instinct is to stop the immediate stress and say thank you and try for someone else - especially since I suspect the answer is "no" and he just can't say it. After he initially put it on hold, we started a social media campaign just before Covid hit which understandably has gone nowhere. I can't help but feel that my brother in law is saying no in a roundabout way and I'm having to guess his real intention. Of course telling him he's off the hook definitively may be biting off my nose to spite my face. Waiting has always been a struggle for me. I'm ok with hearing that I am WAY off base. I need some perspective. Any thoughts or methods to endure the roller coaster that is waiting for a transplant?

[Alfredmynewkidney]

Are you listed at a transplant center? I had many people tested but no one was a match. I was able to get a deceased donor kidney in April. Are you on dialysis? It is a big deal to give someone a kidney. Maybe he is having second thoughts. I was unsure if someone was a match if I would want them to go through that surgery for me...it's a lot mentally and physically.

[Slcallat in reply to Alfredmynewkidney]

This is a very difficult decision for me also. I’ve had 4 to 5 offers from family and friends to donate their kidney(s) this second time on dialysis. One of my beautiful offers is from a first cousin who offered her organ to me 25 years ago before my first transplant and has stepped up and repeated her offer again since I’ve recently went back on dialysis again.

Thank God I was Blessed to get a cadaver donor the first transplant, but I admit the thought of receiving a living donor Kidney gives me much pause and causes me to have a very emotional reaction. I’m so concerned about their safety? What if they need that organ in the future? How will it change our relationship. Am I worthy of such a selfless gift. Will I be taking something away from them if I decline them what they truly sincerely want to give????????🙃

[blackkat2]

I did an exchange, so matching isn't absolutely necessary. My sister was rejected as my donor for reasons they wouldn't tell either of us. For me, the issues associated with the donor(s) were the most stressful part of the whole process. But my actual donor is doing great--and he was happy with eight weeks of paid medical leave for donating. That's as much perspective as I can offer.

[Transplant314]

Although I do not know your family your instincts are probably correct. Tell your brother in law he is “off the hook”. If he really wants to donate then you will know. You may have to wait until COVID becomes less of an issue but there are good souls out there who are willing to donate and you will eventually find someone.

[Ynnep]

Hi Bax509,

I can certainly understand your concerns. I was on the Gift of Hope list for 6 years and very, very close to dialysis (my creatine was 6.0). I was on the list for 6 years because as soon as my doctor realized that I was in trouble ( creatine of 2.5) she told be do not walk, run to a transplant center and get on the list immediately. Although this information my not be of interest to you, I mention it because many, many people are on the list for a very long time before a match is found. No one else in my family is a match as we all had tried to donate for my sister years earlier. I was in excellent health at that time but not a match for her. My husband was willing to do a swap (give to someone else in exchange for me). That didn't work because he has other health issues. In any case, I eventually got a kidney from someone in very good health and young. I suspect that the person was in a car accident, but your are never given personal information about the donor. As I said, the donor must have been healthy as someone else got the other kidney and someone got a pancreas.

Maybe your brother-in-law has some problems he is unwilling to share but maybe you could talk to you sister and see what the problem is. The whole Covid thing is a real issue and I can understand anyone wanting to avoid any unnecessary surgery. A real heart-to-heart discussion seems to be necessary and keep in mind that this is a very big deal. Any surgery of any kind is a risk and he may be having second thoughts for that reason or because he heard a scary story from someone else. Maybe your doctor could have a chat with him and set the story straight relating to how this is really going to go down for him including recovery time and future health issues.

[Herkidney]

You are in such a difficult position. I think that your instincts are correct and that your brother in law is having second thoughts. If that is the case, he really needs to talk to someone who has been a living donor to get insight as to what he will experience as a living donor. I don’t know where you live, but in the US there are different organizations such as OneLegacy that might be able to help connect your brother in law to someone who may be able to answer questions. Besides the physical health concerns your brother in law might be concerned whether he will be able to obtain health insurance or life insurance after a kidney donation. These are real concerns for living donors. I know it may be so hard to hear but if your brother in law has changed his mind, please know that he went through so much to be approved as a donor. Best wishes for a successful kidney transplant (hopefully in the near future).

[Kbristow]

Your brother in law also has his own social worker to talk to. It is their job to make sure the your brother in law is mentally ready and willing. They will protect him if they sense there is any hesitation and recommend he not donate. Those conversations are completely confidential, and oftentimes if a potential donor wants to withdraw the social worker will work with the transplant team and communicate to the patient that a particular donor was not approved for donation. The reason is not stated; it could be because the transplant center has removed him from consideration, or the donor has taken himself out. So remind him he has his own social worker who is available to help him through any issue outside of the physical part of the evaluation.

A friend of mine has a family member who is on the waitlist. His friend was tested and was a match. But because she had some major family issues going on, the center determined that she was not ready mentally to give and is having them wait a year. In the meantime, the patient/friend continues to stay open to other donors.

I think it best to let your brother in law know that you are completely fine if it does not work out for him to give for whatever reason. He has to be 100% on board and it's okay if not. Keep sharing your need broadly and allow others to approach or call the center directly if they want to explore donation. For me, I had two donors who backed out at the last minute. A surgery date was actually set for the second one, but we postponed for a month because she had a major scheduled event. For whatever reason during that month, she had to withdraw. Before she told me, I could tell there was a lot of hesitation. I reminded her that whatever she was thinking, it would be fine if she didn't ultimately donate. While I would be disappointed (because who wouldn't be!), I needed her to be 100% on board and that I was hopeful there would be others.

As it turned out there were a few others who had contacted the transplant center without telling me and eventually I had my donor. I never knew who they all were and I realize I'm very lucky to even have several people get tested for me, but I also did share more widely after I lost my two initial donors. I always included information for the transplant center to contact directly. I also had a "kidney team" - friends who made themselves available to answer questions confidentially so no one would have to feel awkward by approaching me or my husband directly.

I hope that made sense. The wait and the uncertainty was the hardest part for me, but staying positive and open helped me to focused on keeping myself healthy and strong while finding a donor.

[AnnasChoice]

Hi. Are u on the donor list? I can help you out. I’m looking to give mine.