1. < Transplants

Living Donor: It's a huge responsibility

Posted by fbgibbons672 @fbgibbons672, Sep 11, 2017

I am a match for my sister's kidney transplant and will be heading to Mayo next month for evaluation. My sister has told everyone she knows about me, even refers to me as her "kidney mama". I understand she is excited and I am as well, but now I wonder how I will feel if I don't "pass" and she has to continue her waiting and dialysis. Its a huge responsibility and a huge honor to be able to do this, but.....

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 2, 2018
In reply to @dank "Six plus, years ago I received the gift of life, a liver transplant ! If it..." + (show)
@dank

Six plus, years ago I received the gift of life, a liver transplant !
If it weren’t for my most generous donor and Mayo I’d not be here today, thank GOD !
In October I had my annual 6yr liver check up ( 21 appointments ). Not all of them were relating to my new liver, in fact everything regarding my transplant is going GREAT. I have a few other issues that the folks at Mayo are monitoring, treating, healing, and doing what ever miracle workers do.
Every year my wife and I look forward to our visit to Rochester and make a mini-vacation of it. For me life is going great and I pray that anyone afflicted with this disease will hang in there, follow the medical teams advice, and have the same results .
GOD BLESS !

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@dank, Congratulations on your transplant! There are several other liver recipients who are members. I am a liver/kidney recipient. And my husband an I enjoy our annual trip to Rochester, too!
Thank you for sharing and for joining us on Mayo Clinic Connect!
Rosemary

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 2, 2018
In reply to @mauraacro "I was at Mayo for testing 3 weeks ago but so much has happened in such..." + (show)
@mauraacro

I was at Mayo for testing 3 weeks ago but so much has happened in such a short time that it seems like 3 years ago. I went by myself and after getting my test schedule, I'm glad I did, I would have felt bad for my husband hurrying up and waiting. It was also nice to go back to my hotel and rest, read and watch bad tv without worrying about if he was enjoying the trip. Before I left I cleaned the house and stocked the freezer for the family and for a few days of meals when I got home. We made the decision as a family for me to donate but I didn't want something that I was taking on to put my family too much off their routine while I was gone.
The testing process at Mayo was amazing and exhausting. I had 23 appointments & tests in 2 days and am still surprised that I (and the Mayo team) was able to accomplish so much in such a short time. I had 1 receptionist that was rushed and not outgoing and that was the worst of it. I would not have even noticed her manner at home, it was only compared to how outgoing, friendly and professional I found my team to be, that I noticed it.
For the surgery, my husband will be with me and 1 of my sons will stay at our house with the dogs. We have a website, "Nextdoor" that we use and found a college student that will also stay at our house so the dogs get some extra love and our son doesn't feel pressured to be home all the time. The beauty of this student is that he has 3 room mates and is happily staying for free to have a quieter place to live for a few weeks, some home cooked meals that I will stock for him and access to a free washer and dryer. I am leaving for surgery in 8 days and I have already started getting ready to go. I am both a planner and a procrastinator so I made a huge list of everything I want to get done before I leave, then broke it down into daily tasks. It works on paper but if I get to most of it, I'll be happy -I don't really need to clean the furnace filter before I go but yes, it's on the list.
I don't know if that helped anyone but it made me feel good to put it all in writing. Thanks for letting me post what should be in my journal, online!

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@dank, I want to add my experience: The results are already with my doctor when I have my afternoon appointment - same day.
How do they do that!
Rosemary

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JK | @contentandwell | Jan 3, 2018
In reply to @dank "Six plus, years ago I received the gift of life, a liver transplant ! If it..." + (show)
@dank

Six plus, years ago I received the gift of life, a liver transplant !
If it weren’t for my most generous donor and Mayo I’d not be here today, thank GOD !
In October I had my annual 6yr liver check up ( 21 appointments ). Not all of them were relating to my new liver, in fact everything regarding my transplant is going GREAT. I have a few other issues that the folks at Mayo are monitoring, treating, healing, and doing what ever miracle workers do.
Every year my wife and I look forward to our visit to Rochester and make a mini-vacation of it. For me life is going great and I pray that anyone afflicted with this disease will hang in there, follow the medical teams advice, and have the same results .
GOD BLESS !

Jump to this post

@rosemarya It occurred to me that back when I was talking to Mayo about possibly dual listing there I thought they said that after the first couple of months my care could be transferred to Mass General Hospital. Is that not the way it is done, or do you go to Mayo because you do not have a transplant hospital close to you?
JK

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JK | @contentandwell | Jan 3, 2018
In reply to @mauraacro "I was at Mayo for testing 3 weeks ago but so much has happened in such..." + (show)
@mauraacro

I was at Mayo for testing 3 weeks ago but so much has happened in such a short time that it seems like 3 years ago. I went by myself and after getting my test schedule, I'm glad I did, I would have felt bad for my husband hurrying up and waiting. It was also nice to go back to my hotel and rest, read and watch bad tv without worrying about if he was enjoying the trip. Before I left I cleaned the house and stocked the freezer for the family and for a few days of meals when I got home. We made the decision as a family for me to donate but I didn't want something that I was taking on to put my family too much off their routine while I was gone.
The testing process at Mayo was amazing and exhausting. I had 23 appointments & tests in 2 days and am still surprised that I (and the Mayo team) was able to accomplish so much in such a short time. I had 1 receptionist that was rushed and not outgoing and that was the worst of it. I would not have even noticed her manner at home, it was only compared to how outgoing, friendly and professional I found my team to be, that I noticed it.
For the surgery, my husband will be with me and 1 of my sons will stay at our house with the dogs. We have a website, "Nextdoor" that we use and found a college student that will also stay at our house so the dogs get some extra love and our son doesn't feel pressured to be home all the time. The beauty of this student is that he has 3 room mates and is happily staying for free to have a quieter place to live for a few weeks, some home cooked meals that I will stock for him and access to a free washer and dryer. I am leaving for surgery in 8 days and I have already started getting ready to go. I am both a planner and a procrastinator so I made a huge list of everything I want to get done before I leave, then broke it down into daily tasks. It works on paper but if I get to most of it, I'll be happy -I don't really need to clean the furnace filter before I go but yes, it's on the list.
I don't know if that helped anyone but it made me feel good to put it all in writing. Thanks for letting me post what should be in my journal, online!

Jump to this post

@rosemarya I had been going weekly for lab work and MGH had me using a lab that has facilities everywhere -- Quest. I would go in the morning before 9:00 and I would have the results in my email by about 2:00 in the afternoon. MGH had the Quest that drew my blood send it to the testing facility by courier STAT. Right now things are stable so I haven't gone in a few weeks but as of Saturday my drugs change again so I will resume next week. They are changing because I was on sirolimus but that that can interfere with healing so they switched me back to tacrolimus prior to my knee replacement and now I am going back to sirolimus.
JK

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 3, 2018
In reply to @dank "Six plus, years ago I received the gift of life, a liver transplant ! If it..." + (show)
@dank

Six plus, years ago I received the gift of life, a liver transplant !
If it weren’t for my most generous donor and Mayo I’d not be here today, thank GOD !
In October I had my annual 6yr liver check up ( 21 appointments ). Not all of them were relating to my new liver, in fact everything regarding my transplant is going GREAT. I have a few other issues that the folks at Mayo are monitoring, treating, healing, and doing what ever miracle workers do.
Every year my wife and I look forward to our visit to Rochester and make a mini-vacation of it. For me life is going great and I pray that anyone afflicted with this disease will hang in there, follow the medical teams advice, and have the same results .
GOD BLESS !

Jump to this post

@contentandwell, I do have a transplant hospital nearby, It is only 45 minute drive. That is where I was originally listed for my liver transplant. But, due to complications, they sent me to Mayo, and that is where I received my transplant.

Mayo monitors me from a distance, and I return annually for my check-up. Every year they give me a standing order for my labs, and then my PCP writes it for the local lab with instruction to fax to Mayo. I usually get labs drawn 7:30 AM and I can go to the lab and get a copy later that morning. I like to be sure that they did get faxed. I also have a tacrolimus lab kit that Mayo supplies - the phlebotomist only has to fill the tube, then I put it the kit and I drop it in the outgoing mail. If I mail it on Monday, Mayo has it in my system on Friday. My transplant nurse will contact me about medicine changes. It is an efficient process for us.

If I am hospitalized, or need ER care, the attending physician will communicate with Mayo transplant Dept via a 24hr phone line. And this has occurred on several occasions. I also can call 24-7 when I need to.

We never considered transferring my care to local because of the level of care that Mayo was able provided for me. We return to Rochester annually for a 2 -3 day visit. I guess that someday, when the travel becomes too much, we will transfer to closer to home facility.
Rosemary

REPLY
airsky21 | @airsky21 | Jan 5, 2018

I am a living donor the transplant was March 15, 2016
I did not know the recipient at the time. She was a very sick woman and has since had a new lease on life. I feel incredibly grateful to be part of this miracle. My health is great my recovery was great, I was sore of course and it took time to heal but i would do it all over in a heartbeat.

REPLY
2 replies
mauraacro | @mauraacro | Jan 5, 2018
In reply to @airsky21 "I am a living donor the transplant was March 15, 2016 I did not know the..." + (show)
@airsky21

I am a living donor the transplant was March 15, 2016
I did not know the recipient at the time. She was a very sick woman and has since had a new lease on life. I feel incredibly grateful to be part of this miracle. My health is great my recovery was great, I was sore of course and it took time to heal but i would do it all over in a heartbeat.

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thank you for posting this! If I have the timing correct, at this time next week, they should be finishing up with my surgery. I'm glad to hear that both you and the recipient are doing well.

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hkvanhouten | @hkvanhouten | Jan 5, 2018

I donated a kidney to my sister in August 2015. We are both doing great. Our family (my father's side) is affected by polycystic kidney disease (PKD) so many family members have undergone transplants mostly living donor. Besides a donor I have been on the caregiving side too as my husband had a living donor kidney transplant (2010) followed by a pancreas transplant (2015). He is now insulin free!

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 5, 2018
In reply to @dank "GOD BLESS YOU !" + (show)
@dank

GOD BLESS YOU !

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@dank, Thank you for your participation in this discussion. I believe that when recipients like you share experiences and send blessings, that we are able to give hope to others.
I invite you to stay in touch on this conversation, and/or to join in on any other discussion that looks interesting to you. At 6 years post transplant, I feel certain that you have a lot of practical experiences to share.
Rosemary

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