What is the Living Donor Process Like?

Posted by ek101085 @ek101085, Apr 11, 2019

Hello,

I was wondering if anyone is able to shed some light on the process of being a living donor. I had just completed the questionnaire a week ago today for my sister, the day she found out she had been approved for a transplant at the Mayo. We have not heard anything other than her receiving a letter confirming she was approved for transplant The email said I would be contacted within 5 days.. I'm assuming I'm just worrying and being impatient since it has only been a week. Just seeing if there was anyone out that that is able to provide some reassurance in the process. There wasn't anything I answered in the health questionnaire that I would thing would not me allow to be tested..at least I had thought so. Amy info would be greatly appreciated.

Thanks!!

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@ek101085

Hello!

I was fully approved as an organ donor in July.
Because of the rare disease and all the options and preconditioming that may or may not need to be completed before an actual transplant can take place, we are still awaiting to hear when a surgery may be scheduled.
My sisters case is complicated and the waiting game is a tough one, especially when she continues to get worse.
Hopefully 2020 will be our year.

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@ek101085, Thank you for sharing your update. I understand the difficulty of the wait, the complications, and the declining health. Organ transplant is not a Hollywood movie script, is it?
I assume that your sister is in close contact with her transplant doctor. Before my transplant at Mayo Rochester, I was told by the transplant team to stay nearby, and since I live in Kentucky, that meant for me to stay in Rochester. For my husband and me, that amounted to just over 8 weeks prior to transplant. We stayed at the Gift of Life Transplant House. Is your sister in or near the transplant center for treatment now?

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I was a living donor for my father. I had to convince him to allow me to be tested since he had some reservations about it. He was concerned about my well-being. The staff at Mayo were great in helping me and my father work through his concerns. After I filled out the mail in history it did feel like forever to hear back. (I am also impatient) after I was approved past the first round. They set up a time for me to come down to Jacksonville to get a very detailed workup. It was a few days of testing and blood work. That was run very efficiently. I again had to wait to hear. So there is a lot of waiting while the check and double check everything but it is well worth it. For the best outcome for everyone involved. It has been 6 years now and it is most certainly the best choice I have every made to be a living donor. The waiting is hard but well worth it to be done right!!! Best wishes to you and your sister

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@boricham, Welcome to Mayo Clinic Connect. I want to express my sincere thank-you for sharing your living donor experience. It is an honor to meet you and to learn about your decision to be a living donor for your dad.

I am a recipient, however my organs are from a deceased donor. And I was extremely ill during the long months approaching my surgery so I did not have much energy to do much of anything. From your standpoint as a healthy donor, How did you pass the time during the long waiting period? What can you suggest for someone who is trying to be patient while awaiting their opportunity to participate in living organ donation?

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I went to the gym a lot and walked on the treadmill. Exercise seems to help me when I'm anxious about something.

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@mycase1968

I have a friend with end stage kidney disease. I couldn't imagine a person the age of my son dying at the age of 52. I am 70 years old and didn't think I would be able to donate to him. I filled up the questions on line. Christine, the transplant coordinator at the Mayo Clinic Florida called me to ask some questions. I didn't know my blood type, so she sent me a blood kit. I took it to the lab and after done they sent it back to Mayo. She called me a few days later and told me I was a match. They scheduled a week of testing. I never thought it would be so intense. I think i did very well in all the tests. The next one I need to have is a colonoscopy Tuesday. After that, they will let me know if it's a go. I am so excited, hope I can pass all the tests for the surgery. I am not afraid, I am praying and waiting.

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@mycase1968 people like you amaze me and encourage me. Thank you that you are willing to make such a loving donation. I have had kidney problems for 4 years and have been on the waiting list for a transplant for 1 year. I pray that you will pass all the tests and if you can donate, that all may go well with you and your recipient.

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I have a friend with end stage kidney disease. I couldn't imagine a person the age of my son dying at the age of 52. I am 70 years old and didn't think I would be able to donate to him. I filled up the questions on line. Christine, the transplant coordinator at the Mayo Clinic Florida called me to ask some questions. I didn't know my blood type, so she sent me a blood kit. I took it to the lab and after done they sent it back to Mayo. She called me a few days later and told me I was a match. They scheduled a week of testing. I never thought it would be so intense. I think i did very well in all the tests. The next one I need to have is a colonoscopy Tuesday. After that, they will let me know if it's a go. I am so excited, hope I can pass all the tests for the surgery. I am not afraid, I am praying and waiting.

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@mycase1968

I have a friend with end stage kidney disease. I couldn't imagine a person the age of my son dying at the age of 52. I am 70 years old and didn't think I would be able to donate to him. I filled up the questions on line. Christine, the transplant coordinator at the Mayo Clinic Florida called me to ask some questions. I didn't know my blood type, so she sent me a blood kit. I took it to the lab and after done they sent it back to Mayo. She called me a few days later and told me I was a match. They scheduled a week of testing. I never thought it would be so intense. I think i did very well in all the tests. The next one I need to have is a colonoscopy Tuesday. After that, they will let me know if it's a go. I am so excited, hope I can pass all the tests for the surgery. I am not afraid, I am praying and waiting.

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Hi @mycase1968, I would like to add my welcome to you. You'll notice that I moved your message to this existing discussion about the living donor process. Click VIEW & REPLY to see the past posts from other members who, like you, are going through evaluation.

Congratulations on being a match for your friend. What an incredible gift you are giving. Your sharing your experiences as you go through the testing and evaluation process will be so helpful for others who are considering living donation. You're right that it is intense. They want to ensure that everything is top notch for you and for your friend the recipient.

You may also be interested in this related discussion:
- Kidney transplant: Thinking of becoming a donor https://connect.mayoclinic.org/discussion/kidney-transplant-3/

And should you get through the evaluation process and be ready to donate, you'll most certainly appreciate connecting with members in this discussion:
- Kidney transplant – The Journey from the Donor's Side – https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/

All the best with the colonoscopy next week. The prep is the most challenging part. I never thought it would be so hard to drink fluids. But in the grand scheme of things, that's nothing. For someone thinking of starting the donor process, what would be your advice or tip to get started?

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They are slow! You need to call back. Your sister can not call for you. The recipient team doesn’t communicate with the donor team.

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@mycase1968, I want to drop in and check on how you are getting along. If you are going to move forward with transplant surgery, we are here to support you. And if the surgery is not going to be possible, we are here, too. Either way, you are not alone.

@morty, I want you to know that I am thinking about you and hoping that you are as comfortable as is possible at this point. I know how hard the waiting and unknowing is. How are you feeling?

@ek101085, I am sending my thoughts and hopes that you and your sister are on a forward journey.

@marvinjsturing, will you be going to Omaha in January? If so, will you need to be re-evaluated to be listed there, too?
How does that work?-being listed at 2 centers?

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@rosemarya

@mycase1968, I want to drop in and check on how you are getting along. If you are going to move forward with transplant surgery, we are here to support you. And if the surgery is not going to be possible, we are here, too. Either way, you are not alone.

@morty, I want you to know that I am thinking about you and hoping that you are as comfortable as is possible at this point. I know how hard the waiting and unknowing is. How are you feeling?

@ek101085, I am sending my thoughts and hopes that you and your sister are on a forward journey.

@marvinjsturing, will you be going to Omaha in January? If so, will you need to be re-evaluated to be listed there, too?
How does that work?-being listed at 2 centers?

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@rosemarya I have 2 days of appointments scheduled in Omaho for January 8 & 9. They initially told me that they would try to use as many test results from Mayo as possible. My schedule in Omaha is very similar to my annual reevaluation at Mayo including a heart stress test. I have to meet with the transplant coordinator, pharmacist, psychologist and financial counselor. I have lab work scheduled for both mornings and they have ultrasounds and CT scans scheduled to determine the best side for the transplant. I also have a couple of meetings with the transplant surgeon. I have been encouraged by several people to be registered in more than one transplant region. I have not verified it yet, but someone told me I cannot be registered at more than one transplant center in the same region

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