Living Donor Process

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!!

I would love get an update about you experiences, and to welcome anyone who is considering living organ donation to share their experience and/or their questions.

@jdcowle5, I am thinking about you and I commend you for your willingness to consider being an organ donor. I am aware that the evaluation is very thorough, and can be lengthy and can result in either being eligible or not. Regardless of the result, you are a hero for what you are doing. Were you able to proceed to evaluation? I am interested in any update that you have to share.

@ek101085, I am interested in hearing from you. Have you received any update regarding your organ donation to your sister? If you are not a match for her, has there been any mention of being part of a donation chain?

@elevinton, How are you? Were you able to proceed with your surgery?

@marvinjsturing, I am thinking about you as you continue your journey toward your own organ transplant. I salute you for your positive attitude and I always welcome your input. I hope that your path is remaining smooth.

@mauraacro, @jolinda, @cmael – Do you want to share any updates? Do you have any suggestions to offer to anyone who is considering living donation?
I also want to invite @rebekahinvt .

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@rosemarya

I would love get an update about you experiences, and to welcome anyone who is considering living organ donation to share their experience and/or their questions.

@jdcowle5, I am thinking about you and I commend you for your willingness to consider being an organ donor. I am aware that the evaluation is very thorough, and can be lengthy and can result in either being eligible or not. Regardless of the result, you are a hero for what you are doing. Were you able to proceed to evaluation? I am interested in any update that you have to share.

@ek101085, I am interested in hearing from you. Have you received any update regarding your organ donation to your sister? If you are not a match for her, has there been any mention of being part of a donation chain?

@elevinton, How are you? Were you able to proceed with your surgery?

@marvinjsturing, I am thinking about you as you continue your journey toward your own organ transplant. I salute you for your positive attitude and I always welcome your input. I hope that your path is remaining smooth.

@mauraacro, @jolinda, @cmael – Do you want to share any updates? Do you have any suggestions to offer to anyone who is considering living donation?
I also want to invite @rebekahinvt .

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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.

REPLY
@rosemarya

I would love get an update about you experiences, and to welcome anyone who is considering living organ donation to share their experience and/or their questions.

@jdcowle5, I am thinking about you and I commend you for your willingness to consider being an organ donor. I am aware that the evaluation is very thorough, and can be lengthy and can result in either being eligible or not. Regardless of the result, you are a hero for what you are doing. Were you able to proceed to evaluation? I am interested in any update that you have to share.

@ek101085, I am interested in hearing from you. Have you received any update regarding your organ donation to your sister? If you are not a match for her, has there been any mention of being part of a donation chain?

@elevinton, How are you? Were you able to proceed with your surgery?

@marvinjsturing, I am thinking about you as you continue your journey toward your own organ transplant. I salute you for your positive attitude and I always welcome your input. I hope that your path is remaining smooth.

@mauraacro, @jolinda, @cmael – Do you want to share any updates? Do you have any suggestions to offer to anyone who is considering living donation?
I also want to invite @rebekahinvt .

Jump to this post

I am coming up on my 2 year anniversary of surgery.
Mayo sent the box of lab work on Monday to complete and ship back. My blood draw was in Portland, OR on Thurs morning, I Fed X'd it to Mayo and had the results in my inbox Friday at noon. I am equally impressed by the speed of things Mayo does as I am by the fact that I had an organ removed with very little effect on my body and no negative effect on my health.
I checked in with the recipient and all is well from her side too!

To anyone considering organ donation- This was one of the best choices I have ever made and if possible, I would do it again.
No matter how far you make it in the evaluation process, you will have more information about living donation than most people and can use that information to encourage others to consider donation.

REPLY
@rosemarya

I would love get an update about you experiences, and to welcome anyone who is considering living organ donation to share their experience and/or their questions.

@jdcowle5, I am thinking about you and I commend you for your willingness to consider being an organ donor. I am aware that the evaluation is very thorough, and can be lengthy and can result in either being eligible or not. Regardless of the result, you are a hero for what you are doing. Were you able to proceed to evaluation? I am interested in any update that you have to share.

@ek101085, I am interested in hearing from you. Have you received any update regarding your organ donation to your sister? If you are not a match for her, has there been any mention of being part of a donation chain?

@elevinton, How are you? Were you able to proceed with your surgery?

@marvinjsturing, I am thinking about you as you continue your journey toward your own organ transplant. I salute you for your positive attitude and I always welcome your input. I hope that your path is remaining smooth.

@mauraacro, @jolinda, @cmael – Do you want to share any updates? Do you have any suggestions to offer to anyone who is considering living donation?
I also want to invite @rebekahinvt .

Jump to this post

A year ago last August, I was tested and approved for a kidney transplant at Mayo. Because of my history of pancreatic cancer, I was placed on the inactive list. I made it known that I was in need of a kidney. Two people offered to be living donors. The first one was disqualified because of medication she was on. The second one, my sister, filled out the online questionnaire and was scheduled for testing in late June. In early June, I went to Rochester for a PET scan. At that time, I met the final requirement of being cancer free for 5 years and was placed on the active list for a transplant. A few days later, my sister was diagnosed with Mantel Cell Lymphoma, a rare kind on non-hodgkin's leukemia. (She has now completed her chemo and is currently scheduled for a stem cell transplant in January. This cancer is not curable, but the transplant is being done to help extend the time she is in remission.) At this time, I am not aware of anyone working on becoming a living donor. I am scheduled to go to Nebraska Medicine in Omaha in January to be tested to see if I can be placed on their transplant list. The wait list at Mayo is currently 3 – 7 years and the wait list at Nebraska Medicine is currently 1 – 3 years.

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@marvinjsturing

A year ago last August, I was tested and approved for a kidney transplant at Mayo. Because of my history of pancreatic cancer, I was placed on the inactive list. I made it known that I was in need of a kidney. Two people offered to be living donors. The first one was disqualified because of medication she was on. The second one, my sister, filled out the online questionnaire and was scheduled for testing in late June. In early June, I went to Rochester for a PET scan. At that time, I met the final requirement of being cancer free for 5 years and was placed on the active list for a transplant. A few days later, my sister was diagnosed with Mantel Cell Lymphoma, a rare kind on non-hodgkin's leukemia. (She has now completed her chemo and is currently scheduled for a stem cell transplant in January. This cancer is not curable, but the transplant is being done to help extend the time she is in remission.) At this time, I am not aware of anyone working on becoming a living donor. I am scheduled to go to Nebraska Medicine in Omaha in January to be tested to see if I can be placed on their transplant list. The wait list at Mayo is currently 3 – 7 years and the wait list at Nebraska Medicine is currently 1 – 3 years.

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@marvinjsturing Keeping my fingers crossed for you, and your sister!
Ginger

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@marvinjsturing

A year ago last August, I was tested and approved for a kidney transplant at Mayo. Because of my history of pancreatic cancer, I was placed on the inactive list. I made it known that I was in need of a kidney. Two people offered to be living donors. The first one was disqualified because of medication she was on. The second one, my sister, filled out the online questionnaire and was scheduled for testing in late June. In early June, I went to Rochester for a PET scan. At that time, I met the final requirement of being cancer free for 5 years and was placed on the active list for a transplant. A few days later, my sister was diagnosed with Mantel Cell Lymphoma, a rare kind on non-hodgkin's leukemia. (She has now completed her chemo and is currently scheduled for a stem cell transplant in January. This cancer is not curable, but the transplant is being done to help extend the time she is in remission.) At this time, I am not aware of anyone working on becoming a living donor. I am scheduled to go to Nebraska Medicine in Omaha in January to be tested to see if I can be placed on their transplant list. The wait list at Mayo is currently 3 – 7 years and the wait list at Nebraska Medicine is currently 1 – 3 years.

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@marvinjsturing I will have you in my thoughts and prayers. I know the waitlist for kidneys is very long. My niece's husband was on dialysis for five years and finally had a transplant in August. He is doing fabulously now.

You don't mention where you live but I hope you do keep looking at transplant centers to find out where the shortest waits are, as long as they are at excellent transplant centers. When I was first a candidate for a liver transplant at Mass General in Boston they told me right up front that other regions would probably be able to transplant me sooner and mentioned a couple of good ones. I did some research too and was about to list at my second choice, Mayo, because they felt they could transplant me sooner than MGH could. Of course having the transplant close to home made MGH my first choice — I live in southern NH and MGH is also very highly rated. I was able to get a transplant there at the same MELD that Mayo thought they could transplant me at.
JK

Liked by Retired Teacher

REPLY
@contentandwell

@marvinjsturing I will have you in my thoughts and prayers. I know the waitlist for kidneys is very long. My niece's husband was on dialysis for five years and finally had a transplant in August. He is doing fabulously now.

You don't mention where you live but I hope you do keep looking at transplant centers to find out where the shortest waits are, as long as they are at excellent transplant centers. When I was first a candidate for a liver transplant at Mass General in Boston they told me right up front that other regions would probably be able to transplant me sooner and mentioned a couple of good ones. I did some research too and was about to list at my second choice, Mayo, because they felt they could transplant me sooner than MGH could. Of course having the transplant close to home made MGH my first choice — I live in southern NH and MGH is also very highly rated. I was able to get a transplant there at the same MELD that Mayo thought they could transplant me at.
JK

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@contentandwell I am 3.5 hours from Rochester and 2 hours from Omaha. My nephrologist works at Sanford in Sioux Falls. The transplant center there won't even talk to me. I always presumed it was because of my history with pancreatic cancer. I have a 5 year history with Mayo. They have a great deal of knowledge about my medical condition. Omaha is closer and I have read good things about them.I will have to see how the testing goes there in January.

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@marvinjsturing

@contentandwell I am 3.5 hours from Rochester and 2 hours from Omaha. My nephrologist works at Sanford in Sioux Falls. The transplant center there won't even talk to me. I always presumed it was because of my history with pancreatic cancer. I have a 5 year history with Mayo. They have a great deal of knowledge about my medical condition. Omaha is closer and I have read good things about them.I will have to see how the testing goes there in January.

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@marvinjsturing I know these setbacks are difficult, but if you can get on a list from a good transplant unit, it wouldn't matter to me, if I needed it if it weren't Mayo. Everybody can't get in Mayo and there are other good hospitals. If the hospital and physician has a good reputation, that's the key, from what I've heard. Maybe there are other hospitals in the area where you live that will put you on their list. My prayers are with you and I hope that all the pieces will fit together and you will have your transplant soon.
Carol

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@marvinjsturing

@contentandwell I am 3.5 hours from Rochester and 2 hours from Omaha. My nephrologist works at Sanford in Sioux Falls. The transplant center there won't even talk to me. I always presumed it was because of my history with pancreatic cancer. I have a 5 year history with Mayo. They have a great deal of knowledge about my medical condition. Omaha is closer and I have read good things about them.I will have to see how the testing goes there in January.

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@marvinjsturing I agree with @retiredteacher, Mayo is great of course but there are many excellent transplant centers. I, of course, favor Mass General in Boston but that is a long way for many people to travel.
There are regional maps showing the states that are in each region. You can list at more than one transplant center. I am not sure, but I think you can only list at one transplant center per region. Different regions tend to transplant at different MELD scores also so it is best to find the one with the lowest MELD at transplant when possible.
There is a wealth of information in the reports on SRTR.org and UNOS.org. Plus, a great resource is Compare Transplant Centers http://www.comparetransplantcenters.com/. Their website does not tell much but she puts a lot of info on Facebook (just "follow" Compare Transplant Centers). I know, many people immediately think they do not want to be on Facebook, but you can limit your exposure completely so you are basically invisible and only follow certain things that can be helpful.
The ratings on the SRTR database can be misleading I think, but they are a start.
JK

Liked by Retired Teacher

REPLY
@marvinjsturing

@contentandwell I am 3.5 hours from Rochester and 2 hours from Omaha. My nephrologist works at Sanford in Sioux Falls. The transplant center there won't even talk to me. I always presumed it was because of my history with pancreatic cancer. I have a 5 year history with Mayo. They have a great deal of knowledge about my medical condition. Omaha is closer and I have read good things about them.I will have to see how the testing goes there in January.

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@marvinjsturing, I want to repeat @retiredteacher's comment, "My prayers are with you and I hope that all the pieces will fit together and you will have your transplant soon."

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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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