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!!

Interested in more discussions like this? Go to the Transplants Support Group.

JK | @contentandwell | Jan 5, 2020
In reply to @marvinjsturing "@contentandwell @retiredteacher @rosemarya @1bigblacksuv Thanks for your thoughts and prayers. My wife and I will be..." + (show)
@marvinjsturing

@contentandwell @retiredteacher @rosemarya @1bigblacksuv Thanks for your thoughts and prayers. My wife and I will be driving to Omaha on Tuesday with tests on Wednesday and Thursday. I am not sure when their transplant committee meets, but I am sure I will find out all about their process later this week. Will let you all know once all the tests are done.

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@marvinjsturing we will all be thinking about you and saying prayers, particularly those of us who have traveled this journey. I will be looking forward to hearing how everything goes.

As @retiredteacher commented, that call will come when you least expect it, or at least it did for me, two months sooner than expected.
JK

REPLY
marvinjsturing | @marvinjsturing | Jan 9, 2020
In reply to @marvinjsturing "@contentandwell @retiredteacher @rosemarya @1bigblacksuv Thanks for your thoughts and prayers. My wife and I will be..." + (show)
@marvinjsturing

@contentandwell @retiredteacher @rosemarya @1bigblacksuv Thanks for your thoughts and prayers. My wife and I will be driving to Omaha on Tuesday with tests on Wednesday and Thursday. I am not sure when their transplant committee meets, but I am sure I will find out all about their process later this week. Will let you all know once all the tests are done.

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Just got home this afternoon. While my sister was being evaluated for a stem cell transplant at University of Wisconsin, I was being evaluated for a kidney transplant at Nebraska Medicine in Omaha. Yesterday was the big day. We arrived at the hospital at 6:15 AM, had 11 appointments and left around 4:00 PM. I was scheduled for 6 appointments today, but my transplant coordinator talked to the kidney doctor and explained that I had an echocardiogram and a heart stress test done at Mayo last summer. He looked at the reports from those tests and cancelled my tests at Nebraska Medicine. They then rescheduled my remaining tests for earlier in the day, so we were on our way home by 10:30 AM. The transplant committee meets next Thursday and my transplant coordinator said she would call me on Friday to tell me the results of that meeting. The current wait time for a kidney at Mayo is 3 to 7 years. I have been on Mayo's list for about 1 1/2 years. The current wait time at Nebraska Medicine is 1 to 3 years. Having a living donor would change the wait time to 2 to 4 months instead of years. At this time, to my knowledge, I have no one working on becoming a living donor.

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4 replies
Retired Teacher | @retiredteacher | Jan 9, 2020

@marvinjsturing It seems as if you have done all you can do and have followed the protocol with the tests and assessments. Now is the hard part: to wait and hear the decision of the results of the meeting. I will continue to pray that you will get a go ahead call and get the transplant as soon as possible. You have continued to be brave and positive and know you have a circle of people lending more strength to your circle. I hope to know that you will be accepted and be ready. We are your cheerleaders.
Carol

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jodeej | @jodeej | Jan 9, 2020
In reply to @marvinjsturing "Just got home this afternoon. While my sister was being evaluated for a stem cell transplant..." + (show)
@marvinjsturing

Just got home this afternoon. While my sister was being evaluated for a stem cell transplant at University of Wisconsin, I was being evaluated for a kidney transplant at Nebraska Medicine in Omaha. Yesterday was the big day. We arrived at the hospital at 6:15 AM, had 11 appointments and left around 4:00 PM. I was scheduled for 6 appointments today, but my transplant coordinator talked to the kidney doctor and explained that I had an echocardiogram and a heart stress test done at Mayo last summer. He looked at the reports from those tests and cancelled my tests at Nebraska Medicine. They then rescheduled my remaining tests for earlier in the day, so we were on our way home by 10:30 AM. The transplant committee meets next Thursday and my transplant coordinator said she would call me on Friday to tell me the results of that meeting. The current wait time for a kidney at Mayo is 3 to 7 years. I have been on Mayo's list for about 1 1/2 years. The current wait time at Nebraska Medicine is 1 to 3 years. Having a living donor would change the wait time to 2 to 4 months instead of years. At this time, to my knowledge, I have no one working on becoming a living donor.

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Praying all goes well for you!

REPLY
Mentor
Ginger, Volunteer Mentor | @gingerw | Jan 9, 2020
In reply to @marvinjsturing "Just got home this afternoon. While my sister was being evaluated for a stem cell transplant..." + (show)
@marvinjsturing

Just got home this afternoon. While my sister was being evaluated for a stem cell transplant at University of Wisconsin, I was being evaluated for a kidney transplant at Nebraska Medicine in Omaha. Yesterday was the big day. We arrived at the hospital at 6:15 AM, had 11 appointments and left around 4:00 PM. I was scheduled for 6 appointments today, but my transplant coordinator talked to the kidney doctor and explained that I had an echocardiogram and a heart stress test done at Mayo last summer. He looked at the reports from those tests and cancelled my tests at Nebraska Medicine. They then rescheduled my remaining tests for earlier in the day, so we were on our way home by 10:30 AM. The transplant committee meets next Thursday and my transplant coordinator said she would call me on Friday to tell me the results of that meeting. The current wait time for a kidney at Mayo is 3 to 7 years. I have been on Mayo's list for about 1 1/2 years. The current wait time at Nebraska Medicine is 1 to 3 years. Having a living donor would change the wait time to 2 to 4 months instead of years. At this time, to my knowledge, I have no one working on becoming a living donor.

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@marvinjsturing I along with others, are holding positive thoughts for a great report come next Friday. Will Nebraska Medicine transfer your time from Mayo to their facility, placing you higher on the list? You can continue to be double listed. Great to hear they considered your test results from Mayo as current criteria! When will your sister hear her results?
Ginger

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1 reply
JK | @contentandwell | Jan 9, 2020
In reply to @marvinjsturing "Just got home this afternoon. While my sister was being evaluated for a stem cell transplant..." + (show)
@marvinjsturing

Just got home this afternoon. While my sister was being evaluated for a stem cell transplant at University of Wisconsin, I was being evaluated for a kidney transplant at Nebraska Medicine in Omaha. Yesterday was the big day. We arrived at the hospital at 6:15 AM, had 11 appointments and left around 4:00 PM. I was scheduled for 6 appointments today, but my transplant coordinator talked to the kidney doctor and explained that I had an echocardiogram and a heart stress test done at Mayo last summer. He looked at the reports from those tests and cancelled my tests at Nebraska Medicine. They then rescheduled my remaining tests for earlier in the day, so we were on our way home by 10:30 AM. The transplant committee meets next Thursday and my transplant coordinator said she would call me on Friday to tell me the results of that meeting. The current wait time for a kidney at Mayo is 3 to 7 years. I have been on Mayo's list for about 1 1/2 years. The current wait time at Nebraska Medicine is 1 to 3 years. Having a living donor would change the wait time to 2 to 4 months instead of years. At this time, to my knowledge, I have no one working on becoming a living donor.

Jump to this post

@marvinjsturing I am amazed at the difference in the wait times! I thought all of the kidney wait times were longer than that in Nebraska. A relative had a kidney transplant last summer and he had been listed in two locations but it took 4 or 5 years. So will you be listed at both?
I presume that wait times, as with liver transplants, are based on how much the person is in need of the transplant, not on how long they have been listed. I guess all you can do is check the statistics for all of the kidney transplant centers available to you and choose where they have the most success, and the shortest wait times. If you are not familiar with the SRTR.ORG site, it has all of that info.
JK

REPLY
1 reply
marvinjsturing | @marvinjsturing | Jan 10, 2020
In reply to @gingerw "@marvinjsturing I along with others, are holding positive thoughts for a great report come next Friday...." + (show)
@gingerw

@marvinjsturing I along with others, are holding positive thoughts for a great report come next Friday. Will Nebraska Medicine transfer your time from Mayo to their facility, placing you higher on the list? You can continue to be double listed. Great to hear they considered your test results from Mayo as current criteria! When will your sister hear her results?
Ginger

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@gingerw Nebraska will transfer my time if I ask them to. I have not decided whether or not to do that. The out-of-pocket costs at Nebraska will be significantly higher. At Mayo, I would have to stay in Rochester for 3-4 weeks and I can stay at Gift of Life House where Mayo comes and does your blood work. In Nebraska, I would have to stay in Omaha for 6 weeks in a motel or other housing I could find. My wife would have to drive me to the hospital for all my blood tests and appointments. She is not excited about all that big city driving.

My sister begins her procedure next Tuesday. She will receive several rounds of chemo as an outpatient to kill off her stem cells. Then she will have her own stem cells (harvested a couple of weeks ago) transplanted back into her body. The whole process will take several weeks.

REPLY
3 replies
marvinjsturing | @marvinjsturing | Jan 10, 2020
In reply to @contentandwell "@marvinjsturing I am amazed at the difference in the wait times! I thought all of the..." + (show)
@contentandwell

@marvinjsturing I am amazed at the difference in the wait times! I thought all of the kidney wait times were longer than that in Nebraska. A relative had a kidney transplant last summer and he had been listed in two locations but it took 4 or 5 years. So will you be listed at both?
I presume that wait times, as with liver transplants, are based on how much the person is in need of the transplant, not on how long they have been listed. I guess all you can do is check the statistics for all of the kidney transplant centers available to you and choose where they have the most success, and the shortest wait times. If you are not familiar with the SRTR.ORG site, it has all of that info.
JK

Jump to this post

@contentandwell If Nebraska Medicine approves me, I will be listed at both. The system is designed to give the sickest people a greater chance for a transplant, but length of wait time still plays a significant role. Mayo has 800 people on their wait list. Nebraska has 200. I got that information from SRTR.ORG. Also from that website, the 2 major transplant centers in my area are Mayo and Nebraska Medicine. I know I've looked at that website before, but thanks for reminding me to review that information.

During the transplant education appointment on Wednesday, the nurse shared the story of a gentleman who received the call just months after being listed. He said it was too quick for him and he was too busy at the time. Now, 4 years later, he is still waiting for the second call.

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 10, 2020
In reply to @marvinjsturing "@gingerw Nebraska will transfer my time if I ask them to. I have not decided whether..." + (show)
@marvinjsturing

@gingerw Nebraska will transfer my time if I ask them to. I have not decided whether or not to do that. The out-of-pocket costs at Nebraska will be significantly higher. At Mayo, I would have to stay in Rochester for 3-4 weeks and I can stay at Gift of Life House where Mayo comes and does your blood work. In Nebraska, I would have to stay in Omaha for 6 weeks in a motel or other housing I could find. My wife would have to drive me to the hospital for all my blood tests and appointments. She is not excited about all that big city driving.

My sister begins her procedure next Tuesday. She will receive several rounds of chemo as an outpatient to kill off her stem cells. Then she will have her own stem cells (harvested a couple of weeks ago) transplanted back into her body. The whole process will take several weeks.

Jump to this post

@marvinjsturing

I'm so glad to read your update. You and your wife undoubtedly have a lot of decisions to make. I will certainly pray that you have wisdom regarding these choices and plans!

REPLY
Retired Teacher | @retiredteacher | Jan 10, 2020
In reply to @marvinjsturing "@contentandwell If Nebraska Medicine approves me, I will be listed at both. The system is designed..." + (show)
@marvinjsturing

@contentandwell If Nebraska Medicine approves me, I will be listed at both. The system is designed to give the sickest people a greater chance for a transplant, but length of wait time still plays a significant role. Mayo has 800 people on their wait list. Nebraska has 200. I got that information from SRTR.ORG. Also from that website, the 2 major transplant centers in my area are Mayo and Nebraska Medicine. I know I've looked at that website before, but thanks for reminding me to review that information.

During the transplant education appointment on Wednesday, the nurse shared the story of a gentleman who received the call just months after being listed. He said it was too quick for him and he was too busy at the time. Now, 4 years later, he is still waiting for the second call.

Jump to this post

@marvinjsturing Praying that your call comes soon and that you will go as fast as you can to get your transplant.
Carol

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