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

That's what is so amazing about the world of transplants... like you mentioned, you connect with some of the most kind and compassionate people! My story is also a tiny facet of a much larger one, especially in relation to the other donors and recipients (and their families!) that I have directly and indirectly been involved with on this journey. But no matter how tiny you think your story is, please continue to share it as you are able. I'm always willing to listen! (A few weeks ago I shared parts of my story with someone who has been on both sides of transplant, so I knew I had someone with a wide perspective. I said things aloud that I had only previously stewed about in my own brain. We ended up having a good laugh at times as I realized how ridiculous some of my roller coaster ride really has been. But some of my closest friends or coworkers would never understand. It felt good to share with someone who understood the transplant world.)

@debscherber Welcome to Mayo Clinic Connect! Thank you for posting here, and telling your story. Not feeling alone, or so alone, is the best way we can serve others. For me, in my journey, there have been so many times I felt adrift and alone with no support, or the chance to have someone else nearby [in person or virtually] to kinda lean on. Here on Mayo Clinic Connect, we have the chance to reach up, reach out, and be there. It is indeed powerful.
Ginger

I was also denied living kidney organ donor (through another hospital). I completed the evaluation, was told by the surgeon that the transplant is a go, but then later denied after my 24-hour creatinine clearance test showed my creatinine level was very low, not even within the threshold; I was told my creatinine has to be at least 90 to donate a kidney. When I asked if I could fix this (i. e., diet, etc) I was met with an emphatic “no”. I was devastated but not nearly as my best friend (the recipient) as I was the only one healthy enough to be the living organ donor. She is 75 years old and living organ donor is her only option; I am 65 years old and in excellent health.

I relied implicitly on the hospital staff to guide me through the process, but I should have done my homework. I was not aware that to be a living kidney organ donor, my creatinine must be at least 90; I was under the impression that the lower the creatinine, the healthier the kidney.

Yes, and the connection is truly on a visceral level. This past week I've been having a great deal of abdominal pain (which is where I tend to carry my grief and worry for others). I've not usually one to be emotionally empathetic, it seems to settle in my body. Like a labor. But it feels pretty wonderful when that pain subsides. My body isn't just made for pain but for healing and joy.

Pinay, my creatinine was also very low on my initial urine tests. When I saw the results posted, that's when I did the research, too. I understand how you feel, like I *should* have done that sooner. But I shot a message to my coordinator and told her it was low probably because I'm on a plant-based diet and I was willing to adjust it during the process and recovery. They told me there were other red flags but wanted to move forward. When I did the 24 hour collection, my creatinine levels were normal and I was so happy I was jumping up and down. Then, two days later, they denied me because of my Kappa Lambda test.

I don't know. You can do a lot of homework but there are so many factors and so many tests they run and, apparently, there are different standards depending on the hospital. I still do wrestle with how I *should* have known I wasn't healthy enough to donate or that there was something wrong so I get that.

@brokendoll, @debscherber
Thank you for continuing this conversation here in this Support Group. The title: "Any support for those who have been denied being living donor" is easily recognized and accessible to others who share a similar experience. I look forward to other living donor applicants to join you here. Your words, your generosity are powerful. Only you can know how it feels to be denied this dream. I commend you for your determination and commitment to make the most of this situation. I urge you to keep the conversation going in this group. You are part of the Transplant World.

Here is a place to share a summary of your story when you are ready to put it on paper:
- Organ Donation and Transplant: What is Your story?
https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

@brokendoll @pinay2 @debscherber, I am grateful that this discussion has been added to the group and that you shared the perspective of willing donors who had to bear the devastating news of being rejected and unable to donate. It's a loss and grief that far too often goes misunderstood. I know there are many others like you out there who will benefit from this discussion. Thank you.

I wonder if you might also wish to add to this older discussion and share if, how and where you have been able to "donate" in other ways:
- What ways you can help when you can’t be a living donor?
https://connect.mayoclinic.org/discussion/what-ways-you-can-help-when-you-cant-be-a-living-donor/
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@brokendoll, this is certainly a unique way to receive a double punch of tough news. It's a hard way to learn you may have cancer. Have you had time to think about yourself? Has the diagnosis been confirmed?

Thank you so much, Colleen. Yes, I have been doing a deep dive into all the ways in which I can give (and receive) in my community and, even, the non-human world. Through my time volunteering with hospice; meeting with, learning from and checking in on neighbors; and cultivating a, hopefully, mutual relationship with my local ecosystem. This is giving me purpose and much-needed energy and pain management. But it's still difficult sometimes to break through the blues of living in a culture that is, too often, disconnected in a real, visceral way.

My (former) recipient is still in the hospital and I can hear the worry in his voice when I call, so much a deviation from the optimism he once had. I think I can hear a frustration when I tell him how sorry I am; I don't want him to feel obligated to console me but to focus his energy on his own healing. But I guess I see myself in him in that way, too. Part of my healing is to tend to the healing of others. Even if it is to just bear witness.

No diagnosis on my part yet. I was just contacted by the Hematology clinic yesterday to set my initial consultation. Unfortunately, it may be another month before that so I have to sit and wait. But I'm a pro at that and I'm in good company.

A) I would say follow up on the possible blood cancer. The screening process is designed to protect you as the donor, so it sounds like there is a possible big health concern there.

B) Consider 2nd, 3rd, 4th opinions. I was declined by my local hospital and was devastated, but then realized that that didn't necessarily have to be the final word. Hospitals want healthy donors, so do some research and see if there is another place that feels like a good match for you and check it out. I was able to donate at another hospital and had very few issues and received excellent care. But seriously, follow up on the blood cancer concern...

Thank you. Fortunately, the hospital I was going through (U of U) has been excellent and sent a referral with their cancer center. I am doing a virtual call with the doctor tomorrow to go over what to expect with the bone biopsy (ugh, not looking forward to that!) then going out there next week to get labs and the biopsy.

I'm on the fence about trying to reapply with another hospital if I get the all clear. That wouldn't help my original recipient who goes through U of U and I'm afraid, with this intermittent fatigue I've been dealing with, I still might not be healthy enough.