1. < Transplants

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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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 23, 2019

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 .

REPLY
3 replies
ek101085 | @ek101085 | Nov 23, 2019
In reply to @rosemarya "I would love get an update about you experiences, and to welcome anyone who is considering..." + (show)
@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

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
1 reply
mauraacro | @mauraacro | Nov 23, 2019
In reply to @rosemarya "I would love get an update about you experiences, and to welcome anyone who is considering..." + (show)
@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
marvinjsturing | @marvinjsturing | Nov 24, 2019
In reply to @rosemarya "I would love get an update about you experiences, and to welcome anyone who is considering..." + (show)
@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.

REPLY
2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 24, 2019
In reply to @marvinjsturing "A year ago last August, I was tested and approved for a kidney transplant at Mayo...." + (show)
@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.

Jump to this post

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

REPLY
JK | @contentandwell | Nov 24, 2019
In reply to @marvinjsturing "A year ago last August, I was tested and approved for a kidney transplant at Mayo...." + (show)
@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.

Jump to this post

@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

REPLY
1 reply
marvinjsturing | @marvinjsturing | Nov 24, 2019
In reply to @contentandwell "@marvinjsturing I will have you in my thoughts and prayers. I know the waitlist for kidneys..." + (show)
@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.

REPLY
3 replies
Retired Teacher | @retiredteacher | Nov 25, 2019
In reply to @marvinjsturing "@contentandwell I am 3.5 hours from Rochester and 2 hours from Omaha. My nephrologist works at..." + (show)
@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

REPLY
JK | @contentandwell | Nov 25, 2019
In reply to @marvinjsturing "@contentandwell I am 3.5 hours from Rochester and 2 hours from Omaha. My nephrologist works at..." + (show)
@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.

Jump to this post

@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

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 25, 2019
In reply to @marvinjsturing "@contentandwell I am 3.5 hours from Rochester and 2 hours from Omaha. My nephrologist works at..." + (show)
@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.

Jump to this post

@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."

REPLY
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