What ways you can help when you can’t be a living donor?

Posted by Colleen Young, Connect Director @colleenyoung, Thu, Aug 22 11:24am

Imagine, you’ve volunteered to be a living donor. It’s a big decision. You’re excited. You’re nervous. You feel good because you’re about to give the gift of life! But for some reason beyond your control, you’re declined and unable to be a living donor. Now the emotions take a big swing in the other direction. Disappointment. Perhaps anger. And a sense of loss. You really wanted to give.

Are there other ways you can help someone who needs a transplant?

The Mayo Clinic writing team is writing an article to support people who are not able to be a living donor. They would like to hear from you.

  • Are you someone who wanted to be a living donor, but couldn’t? What ways were you able to help instead?
  • Are you a transplant recipient? What support did you find helpful from others who couldn’t be your living donor?
  • Are you a caregiver or family member of someone who needs or needed a transplant, but you couldn’t be the donor? What things did you do that helped you to help?

I am a living donor but if I wasn't able to donate a big thing I could do to help is to talk about it with others.
Depending on how far along I got in the process (talking to family, initial screening, bloodwork, evaluation etc) I would have more information about donating than the average person.
I had no idea that I didn't have to "match". I thought I was too old & fat. I thought I couldn't afford it. I thought I lived too far away. I was worried about needing the kidney someday. All of those were wrong.
I have a hard time, especially in person, telling people I'm a donor. It feels like I'm looking for accolades but I love to get the information out there about how easy Mayo & the recipient made things for me.

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Tell your story! Let the accolades come, just your one small paragraph would inspire me to be a living donor if I was eligible. I am not eligible because of the cancer, I cannot even give blood. I was very disappointed! But I cared for the animals left while the person received a kidney from someone else. Animals are really my heart, so that helped.

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I would have loved to be a donor. Until 1988 I donated blood every three months, like my dad did. Then I got the diagnosis of Systemic Lupus. At that time, they would take your blood, then give you a sheet that let you answer if you felt that your pint was able to be used for a transfusion. I had even tested for bone marrow transplant, and a week after the diagnosis, I received word that I was a match. But I could no longer, in good conscious, proceed with that. It made me very sad, and over the years my acceptance of all this meant there was a bigger cause for me champion. Although I can no longer consider kidney donation, after I die any organ that is viable will be donated.
Ginger

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Although my husband and I were blood matches, a good start for living donor kidney transplant, we were both turned down when we tried to donate to our friend who was going on the list. I previously had breast cancer and was turned down for that reason. My husband is 79 and has early Alzheimer's although he can tell you why he wants to donate and understands the process. He was turned down because of age and the impact of major surgery on dementia.
What we have done is to stay in contact with our friend, to share the process and outcome with him and his wife so that they know what donors need to be doing, and we also gave them a bear totem, a Native American symbol of strength and healing which he finds comforting.

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@deanaliddy

Although my husband and I were blood matches, a good start for living donor kidney transplant, we were both turned down when we tried to donate to our friend who was going on the list. I previously had breast cancer and was turned down for that reason. My husband is 79 and has early Alzheimer's although he can tell you why he wants to donate and understands the process. He was turned down because of age and the impact of major surgery on dementia.
What we have done is to stay in contact with our friend, to share the process and outcome with him and his wife so that they know what donors need to be doing, and we also gave them a bear totem, a Native American symbol of strength and healing which he finds comforting.

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@deanaliddy Being supportive like you describe is so very important to a patient! How is your friend and his wife doing in their search for a donor? Bears are one of my totems, too, which I always remember as there is one who comes by to rustle my berry bushes every so often!
Ginger

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It's a process. The first week the transplant team had surgery to do, the next one two of them were on vacation, and we are hoping that he will get an answer soon. Thanks for caring!

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@deanaliddy

Although my husband and I were blood matches, a good start for living donor kidney transplant, we were both turned down when we tried to donate to our friend who was going on the list. I previously had breast cancer and was turned down for that reason. My husband is 79 and has early Alzheimer's although he can tell you why he wants to donate and understands the process. He was turned down because of age and the impact of major surgery on dementia.
What we have done is to stay in contact with our friend, to share the process and outcome with him and his wife so that they know what donors need to be doing, and we also gave them a bear totem, a Native American symbol of strength and healing which he finds comforting.

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@deanaliddy, I want to say Welcome to Connect. Your desire to help your friend is a kindness beyond words. I am a transplant recipient, and although my donor was a deceased donor, I want to say thank you for what you have already done and for what you are doing now for your friend. Your friend is fortunate to have you at his side.

Here are two links related to living kidney donation that you can share with your friend, and with others who are possible donors.
-This is a Transplant Discussion where living kidney donors are telling about and answering questions about their own experience of kidney donation. It is called- The Journey from the Donor's Side.
https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/
-This is the Living Kidney Donor Toolkit that is part of Connect Transplant Pages.
What to Know about being a Living Kidney Donor https://connect.mayoclinic.org/page/transplant/tab/resource-36/

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RoseMarya, An unrelated question. Can a transplant recipient be a living doner down the road?

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@luckonetj

RoseMarya, An unrelated question. Can a transplant recipient be a living doner down the road?

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@luckonetj and @rosemarya, Thanks for asking this question! At Mayo Clinic, someone who has had a transplant is not able to be a living donor. The effects of immunosuppression would rule that person out as a donor. This answer may differ at other transplant centers, but I have not heard of a center that would allow a recipient to be a living donor. On the plus side, anyone, regardless of their medical history, can register to be a deceased donor. At the time of death, the doctors would determine if organs are able to be used for transplant. If anyone is interested, visit https://registerme.org/ for more information.

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@keggebraaten

@luckonetj and @rosemarya, Thanks for asking this question! At Mayo Clinic, someone who has had a transplant is not able to be a living donor. The effects of immunosuppression would rule that person out as a donor. This answer may differ at other transplant centers, but I have not heard of a center that would allow a recipient to be a living donor. On the plus side, anyone, regardless of their medical history, can register to be a deceased donor. At the time of death, the doctors would determine if organs are able to be used for transplant. If anyone is interested, visit https://registerme.org/ for more information.

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@keggebraaten Hi Kristin, while I know my kidneys will not be able to be transplanted as a deceased donor, other organs may be viable. I have had "donor" on my driver's license for many decades, am registered, and even put it in my medical power of attorney. My husband is a kidney recipient, and commented he always had the "donor" designation, but never thought he would be in a position to receive an organ.
Ginger

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@keggebraaten

@luckonetj and @rosemarya, Thanks for asking this question! At Mayo Clinic, someone who has had a transplant is not able to be a living donor. The effects of immunosuppression would rule that person out as a donor. This answer may differ at other transplant centers, but I have not heard of a center that would allow a recipient to be a living donor. On the plus side, anyone, regardless of their medical history, can register to be a deceased donor. At the time of death, the doctors would determine if organs are able to be used for transplant. If anyone is interested, visit https://registerme.org/ for more information.

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@keggebraaten I asked my transplant surgeon about this, if my liver could be re-transplanted when I die. He said it is rare but possible. I figure that at this time my liver is only 37 years old and very well taken care of so I would love to think if I go someone else could benefit. I know a lot about my donor and this liver has always been well cared for.
JK

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