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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jodeej | @jodeej | 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.

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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

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JK | @contentandwell | 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.

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@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

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Mentor
Ginger, Volunteer Mentor | @gingerw | 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.

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@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

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marvinjsturing | @marvinjsturing | Jan 16, 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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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.

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5 replies
Retired Teacher | @retiredteacher | Jan 16, 2020
In reply to @marvinjsturing "I received a call from my transplant coordinator at Nebraska Medicine this afternoon. She informed me..." + (show)
@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.

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@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

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Mentor
Ginger, Volunteer Mentor | @gingerw | Jan 16, 2020
In reply to @marvinjsturing "I received a call from my transplant coordinator at Nebraska Medicine this afternoon. She informed me..." + (show)
@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.

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@marvinjsturing Getting a spot on the list is a great step. Holding good thoughts on those shadows.
Ginger

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JK | @contentandwell | Jan 16, 2020
In reply to @marvinjsturing "I received a call from my transplant coordinator at Nebraska Medicine this afternoon. She informed me..." + (show)
@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.

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@marvinjsturing hopefully the shadows will prove to be nothing. I had a scan at one point that had a shadow which they thought was a clot. The head radiologist then examined it and decided it was just a blur! Phew. I hope the same for you.
JK

REPLY
jodeej | @jodeej | Jan 18, 2020
In reply to @marvinjsturing "I received a call from my transplant coordinator at Nebraska Medicine this afternoon. She informed me..." + (show)
@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.

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Prayers that it is nothing and that you are activated soon.
Blessings,
JoDee

REPLY
marvinjsturing | @marvinjsturing | Feb 16, 2020
In reply to @marvinjsturing "I received a call from my transplant coordinator at Nebraska Medicine this afternoon. She informed me..." + (show)
@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

Nebraska Medicine called to let me know that I am now on their kidney transplant list as inactive. They had one of their doctors review my PET scan. That doctor said there may be some evidence that my cancer has come back. I asked Mayo to review my results and they have scheduled me for a PET scan next week.

REPLY
5 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 16, 2020
In reply to @marvinjsturing "Nebraska Medicine called to let me know that I am now on their kidney transplant list..." + (show)
@marvinjsturing

Nebraska Medicine called to let me know that I am now on their kidney transplant list as inactive. They had one of their doctors review my PET scan. That doctor said there may be some evidence that my cancer has come back. I asked Mayo to review my results and they have scheduled me for a PET scan next week.

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@marvinjsturing - I am disappointed that you are in this situation. Thanks to Mayo for scheduling you next week. Praying for you.

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