Any support for those who have been denied being living donor?

@brokendoll, I am extending my hand to Welcome you to Mayo Connect. I think that you need a hug right now and so I sent you a hug reaction to your message. As a transplant recipient, I assure you that you are already hero because you took the first step toward living donation.

Not being able to donate is a reality and it helps for people to know this side of the story.. It helps to be supported by people who have “been there”. And it helps to support other people who will be there. By your sharing on Connect, you will help many. I want to thank you for introducing this topic. I know that you are not alone in feeling like you do. I want to thank you for introducing this topic.
While we wait to hear from others who share similar stories, I have located some experiences and ideas that were shared by members in 2019. You will see that you are not alone in feeling like you do.
Here is the link to comments for you to read from Jan. 15, 2019 thru Jan 27, 2029 on pages 28 and 29 :
-Kidney Transplant - The Journey from the Donor's Side
https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/?pg=28
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Brokendoll, I hope that this does not interfere with your friendship. Will you follow-up to learn more about your blood result?

Thank you, that is so helpful. I haven't spoken to the recipient yet, still gathering myself, but he had told me that, no matter what happens, I'd be considered a member of his family. I need to connect with him; hopefully I may still be able to help even if it is just being his advocate.

He set up a foundation not just for himself but to help raise funds for other folks wanting to donate to cover any expenses they may have. I haven't been able to find much online but it is titled the Douglass Family Foundation in Winnemucca Nevada.

I will definitely follow up with blood results and keep in touch with members here. I wanted to be a mentor had this worked out.

@brokendoll I’m sorry I’m a bit confused. Who has the “possible blood cancer” the potential recipient or you the potential donor. Just looking for clarification. I have chronic kidney disease (CKD stage 4) and have been told I will need dialysis & / or a kidney transplant in the future. I have been looking for a living kidney donor for a long time. Years ago my daughter stepped up to be a donor. She got far into the evaluation process and was also denied. It was something with her not me and she was livid! She had 3 little kids, not much support in her marriage or home ….. She claims they told her at the psych eval part that she was “too unstable to be a donor”. I have since learned that if the potential donor changes their mind they may be “denied” to let them off the hook so to speak with no further explanation needed. If the problem is compatibility between the potential recipient and potential donor the transplant center usually offers participation in a paired donation or exchange type of program. Has anything like this been presented to you? You could ask your coordinator about this if you are still interested in being a donor.

My blood tests indicated I could have multiple myeloma so I was denied. I had applied 7 years ago to be an anonymous donor and they passed me at that time because of instability (I had had suicidal thoughts in the past) which I guess is fair. But, yeah, I can't begin to imagine being denied when you're trying to help your parent. It was hard enough after a few phone conversations with a relative stranger. Being face to face with that humanity is rough. Knowing how much someone is suffering and how long the wait for relief can be. Gosh, the waiting has got to be brutal 🙁

I am in a much more supportive space right now than 7 years ago so I decided to try again. I did ask my coordinator if I was tested negative for myeloma could I still donate but the team denied me since it's possible I could have MGUS. I thought about asking if we were compatible but it's a moot point. According to my team, I'm not compatible with anyone. At least not now.

On the bright side, I did speak to the recipient today and he's handling this a whole lot better than I am despite him being in the hospital, possibly over Thanksgiving. He told me he could have another potential donor; they are waiting on his compatibility test right now. I'm keeping my fingers crossed!

And sending all strength and healing to you.

@brokendoll That must be heartbreaking for you! The thing with testing for possible transplant, a potential donor finds out just how healthy they truly are, physically/mentally/emotionally.

I am a multiple myeloma patient, and also a kidney patient. The kidney issue is not related to the myeloma. A few years ago I had asked at the transplant center in Portland [Oregon] if I would be considered for transplant, but they had said "no" due to the underlying kidney disease. My older sister had offered to be evaluated to be a living donor. I decided this week that I am going to contact them again to find out if their protocol will still exclude me.
Ginger

@brokendoll and @gingerw I am terrible with acronyms such as MGUS. But it seemed familiar and I thought of you Ginger. Turns out I was right. I’m glad the two of you have connected. The topic of transplant is near and dear to my heart. I am pancreas post transplant, currently pursuing a kidney transplant. My father-in-law was a kidney transplant recipient with one of my daughters being the living donor. My other daughter was attempting to donate to me (2017) but was denied. She is now fighting stage 4 Breast Cancer. Sometimes I get angry and think that if she would have been accepted as a living donor for me her cancer might have been discovered sooner at a lessor and more treatable stage? (Mayo is really thorough!) Now is when I have to remind myself that as a Christian believer I have a promise from God that all things will work together for good. (Bible Romans 8:28) It doesn’t say that everything IS good but that it works together for good. We can’t always see the working and we sure don’t know or understand the timing! The two of you are in my thoughts and prayers. Plus your friend that is in need of a transplant.

Oh, yes. On some level I had this sinking feeling they'd find something. And I had been ignoring this lingering fatigue and hip and back pain I get sometimes. I just thought this is what my mid-40's look like. It's hard to know what's normal aging and what is something serious. How did you find out about your MM? And is it manageable at least?

Oh, I hope they reconsider. Please let me know what you hear!

Hello @brokendoll and thank you for this brave post. You are correct, there is very little support for those seeking to be living donors. Yes, we have heard that we are living angels for trying, which is valued and appreciated. But some people just don't understand the deep impact a denial can bring for the potential donor. I have been in a similar situation, being denied as a living kidney donor, and then eventually denied as a living liver donor. I can tell you exactly where I was each time I got the difficult news. It is true that transplant centers have different criteria for their donors, some of which is hard to understand in relation to the need. (Some centers wouldn't even evaluate me due to my blood type, etc.) And I completely empathize with you in telling the intended recipient of the denial. It's been almost two years since I had to deliver that news and it breaks my heart again each time I tell that part of my journey. What I pray for most at this time is for your health and for you to get the answers YOU need right now. Throughout this process of evaluation I've learned so much about my health. I sincerely share with people who might be interested in living organ donation that going through this process, the life you save might be your own. I have ventured across the US to pursue living organ donation at other centers and I have been blessed to finally be approved through a program in Texas. But I have also learned that there is tremendous power in being an advocate for living organ donation and I am trying to be even louder with my advocacy voice. I would love to connect with you or anyone else who might want to sort through the ups and downs of the living organ donor process. These challenges certainly fill many chapters of my journey, one which I may publish someday soon. Be well and know someone in Minnesota is sending love your way!

How awful for you and your daughter but, yes, it is true about working together for good. Every time I try to step back and see the greater workings, I realize how limited my understanding is. Everything is so intertwined. But, what I do know for sure, is that experiences like this (which I seem to have a LOT of!) really connect me to the most kind and compassionate people. 🙂

Thank you for that, Deb! Yesterday was the first day in a week I hadn't cried about this; I thought I had gone completely numb. But I can feel the tears stirring again! That's a good thing for me. I am not one to really let myself grieve losses like this but now I understand how healthy and vital it is. I would love to tell my story but it is just one tiny facet in a much larger one.