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!!

@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.

Jump to this post

@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

@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.

Jump to this post

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.

REPLY

@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

REPLY
@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

Praying all goes well for you!

REPLY
@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 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

Liked by marvinjsturing

REPLY
@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

Liked by marvinjsturing

REPLY
@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

Jump to this post

@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
@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.

REPLY
@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
@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

REPLY
@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

Gift of Life was a godsend for us! I wondered if there was anything similar in Omaha. I wish I had the resources to start something similar there. If you go to Omaha, let me know if I can be of assistance!
Blessings,
JoDee

REPLY
@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 I am surprised to hear that length of time plays a role too, I thought it was all on severity. Mayo certainly has a huge advantage with the Gift of Life House. My hospital of choice is Mass General, an hour or two down the highway depending on traffic. For me having a place to stay was not an issue but I don't think they have anything like the accommodations at Mayo, although I could be wrong since I had no need for that. I do know they do not have dedicated housing, but they may have agreements with some local lodging establishments.
The NP at my hepatologist at MGH told me, if I got the call TAKE IT. I think that is important but if you are on the list and in great need I do think that must take priority. I still look back on the day I got the call, two months sooner than they had said would be the earliest I would hear, and remember it so well, particularly how calm my husband and I both were!
I hope that Mayo will come through for you, it sounds like it could be the best option. One never knows. Are they in the same transplant region, so would have access to the same organs? If not then maybe Mayo would come through first. For livers blood type was an important factor too, so I presume it is for kidney also. I am blood type B and that helped get the call sooner than I would have otherwise.
JK

REPLY
@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

@marvinjsuring It sounds like you may have already checked with a hospitalist re housing in Nebraska. I would suggest checking with a few of the large hotels personally, especially those who may have shuttles to the hospital. Ask if they have a special rate for families/ patients in your circumstances. If Nebraska Medicine is located on a university campus, there might be some housing set aside?
Sending prayers of strength and hope.
Ginger

REPLY
@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

I received a call from my transplant coordinator at Nebraska Medicine this afternoon. She informed me that the transplant committee has approved placing my name on their transplant list, however I will be inactive at this time. We recently moved and i had to find a new oncologist. One of the first things he did was to order a PET scan. After the scan, he called and told me there were "shadows" in the area of my Whipple surgery. He recommended that I have another PET scan in 3 months. Nebraska Medicine said they wanted to see the results of that scan before they would make me active.

REPLY
@marvinjsturing

I received a call from my transplant coordinator at Nebraska Medicine this afternoon. She informed me that the transplant committee has approved placing my name on their transplant list, however I will be inactive at this time. We recently moved and i had to find a new oncologist. One of the first things he did was to order a PET scan. After the scan, he called and told me there were "shadows" in the area of my Whipple surgery. He recommended that I have another PET scan in 3 months. Nebraska Medicine said they wanted to see the results of that scan before they would make me active.

Jump to this post

@marvinjsturing. Marvin, Just another bump in the road. We'll pray that this is just a tiny problem that can easily be corrected. I am so happy that they have put you on the list and as soon as you get all the tests done or redone as they require, the road to transplant city should be smooth. Things are looking up.
Carol

REPLY
Please login or register to post a reply.