Living Donor

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…..

@mlmcg

When my brother was diagnosed with end stage renal failure I thought I should see if I would qualify as a donor. Less than 10 months later I was diagnosed with end stage renal failure, different reasons. He had a live donor, a friend of his wife, I did not. He died this last year, I’m still alive. Living with a different life style was not high on his list of things to do. Living with a different live style was and still is important to me to keep the kidney happy. Good luck.
mlmcg

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@mlmcg, I am sorry to hear about the loss of your brother.
I wish you continued strength and adherence to your new healthy lifestyle. May you be blessed with many years with your happy kidney.
Thank you for encouraging all of us who share your journey to keep our new organs happy.
Rosemary

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@cehunt57

I am 12 years post pancreas transplant and currently waiting for a kidney transplant (past 2 years). I am listed on UNOS, but am also looking for a living kidney donor. Today I came across this group on Mayo Connect. I want to say that the donation/transplant process involves a roller coaster of emotions for the potential recipients & donors alike. My own experience is that my 1st transplant 12 years ago came from a deceased donor after a miraculously short wait of 2 weeks. Now after 2 years waiting & looking, only 1 living kidney donor stepped up. It was my daughter. Our blood types, crossmatch/tissue typing was fine. We were both so hopeful. She went off to Mayo in Rochester, MN for donor evaluation the week of Thanksgiving. She ended up deferred for a variety of reasons and claims that she was told that she is an unsuitable donor. She was devastated and angry! I was disappointed but also concerned for my daughter and grateful that Mayo was looking out for her well being. My daughter feels like she was thwarted in doing something she desperately wanted to do and I still don’t have any living donor prospects. I realize that Mayo has a stellar reputation for excellence in Transplantation and I’ve seen how they treat each case/situation individually not just like a number or statistic. So in the meantime I’m trying to pray and wait patiently, take as good a care of myself as I can (so I stay transplant ready) and trust that the best plan for me will unfold at the proper time.

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@cehunt57, I feel your rollercoaster of emotions. It is a very real path for a lot of transplantees, so we do understand. I am sorry that your daughter will not be eligible to be a donor and I imagine how disappointing that is for the both of you. I have met others who also felt the extreme disappointment at their inability to donate a kidney to a loved one. You are absolutely correct about Mayo’s reputation, and how the patient’s (in this case, your daughter) best interest is always the #1 priority. In my opinion, she will always be a hero because of her willingness to donate.
Patience, Prayers, and Hope are what I want for you as the best plan unfolds for you. One slow step at a time is still progress.
Hugs, Rosemary

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@cehunt57

I am 12 years post pancreas transplant and currently waiting for a kidney transplant (past 2 years). I am listed on UNOS, but am also looking for a living kidney donor. Today I came across this group on Mayo Connect. I want to say that the donation/transplant process involves a roller coaster of emotions for the potential recipients & donors alike. My own experience is that my 1st transplant 12 years ago came from a deceased donor after a miraculously short wait of 2 weeks. Now after 2 years waiting & looking, only 1 living kidney donor stepped up. It was my daughter. Our blood types, crossmatch/tissue typing was fine. We were both so hopeful. She went off to Mayo in Rochester, MN for donor evaluation the week of Thanksgiving. She ended up deferred for a variety of reasons and claims that she was told that she is an unsuitable donor. She was devastated and angry! I was disappointed but also concerned for my daughter and grateful that Mayo was looking out for her well being. My daughter feels like she was thwarted in doing something she desperately wanted to do and I still don’t have any living donor prospects. I realize that Mayo has a stellar reputation for excellence in Transplantation and I’ve seen how they treat each case/situation individually not just like a number or statistic. So in the meantime I’m trying to pray and wait patiently, take as good a care of myself as I can (so I stay transplant ready) and trust that the best plan for me will unfold at the proper time.

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@cehunt57 I am so sorry for the disappointment that you and your daughter have suffered. I guess there must be many things beyond blood type that allow a person to be a viable donor. I hope you find another donor, or get a kidney from a deceased donor sometime soon. I know how hard the wait is.
JK

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@cehunt57

I am 12 years post pancreas transplant and currently waiting for a kidney transplant (past 2 years). I am listed on UNOS, but am also looking for a living kidney donor. Today I came across this group on Mayo Connect. I want to say that the donation/transplant process involves a roller coaster of emotions for the potential recipients & donors alike. My own experience is that my 1st transplant 12 years ago came from a deceased donor after a miraculously short wait of 2 weeks. Now after 2 years waiting & looking, only 1 living kidney donor stepped up. It was my daughter. Our blood types, crossmatch/tissue typing was fine. We were both so hopeful. She went off to Mayo in Rochester, MN for donor evaluation the week of Thanksgiving. She ended up deferred for a variety of reasons and claims that she was told that she is an unsuitable donor. She was devastated and angry! I was disappointed but also concerned for my daughter and grateful that Mayo was looking out for her well being. My daughter feels like she was thwarted in doing something she desperately wanted to do and I still don’t have any living donor prospects. I realize that Mayo has a stellar reputation for excellence in Transplantation and I’ve seen how they treat each case/situation individually not just like a number or statistic. So in the meantime I’m trying to pray and wait patiently, take as good a care of myself as I can (so I stay transplant ready) and trust that the best plan for me will unfold at the proper time.

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I’ve had the same situation- happen to me. And like yourself I am doing everything possible to find another living donor. I believe that when the timing is right –
Everything will go forward. Best Regards – Denise

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@mlmcg

When my brother was diagnosed with end stage renal failure I thought I should see if I would qualify as a donor. Less than 10 months later I was diagnosed with end stage renal failure, different reasons. He had a live donor, a friend of his wife, I did not. He died this last year, I’m still alive. Living with a different life style was not high on his list of things to do. Living with a different live style was and still is important to me to keep the kidney happy. Good luck.
mlmcg

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@mlmcg Congratulations on making such a wise life-style decision! I wish you many more years with your new kidney!
Teresa

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@rosemarya

@fbgibbons672, I want you to know that I am thinking about you and your sister. I hope that both of you are doing okay. I also hope that you have gained some support by reading what others are saying as they are going through their own unique journey with kidney donation for a loved one.

Do you have any questions for us? If you are comfortable doing so, do you have any information that you would like to share with any of our other donor patients?
Hugs,
Rosemary

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@uchimaob, I am thinking about you during this month of April, as the nation celebrates and honors organ donors. I don't know whether this worked out for you, however, know that I consider you worthy of being honored because of your willingness to be part of the donor process.
Rosemary

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@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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@fauneconner, I was passing thru some previous conversations, and wanted to drop in and say, "Hi".
I'm thinking about you.
Rosemary

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@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, I hope that you continue to feel well, especially during this month of April which is celebrated as National Donate Life Month. I want to share an upcoming event, in case you are interested -Tuesday, April 24 at 12 p.m. CT for a behind-the-scenes look at the procurement process for a liver transplant.
https://connect.mayoclinic.org/webinar/video-qa-and-behind-the-scenes-liver-transplant/
Rosemary

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@grammyx4

Thank you Rosemary for your sweet Thanksgiving message! We just returned this weekend from the Mayo in Rochester where our son had his final testing to be my husbands living kidney donor. He is a match, but has a few minor things to to work on to be in perfect shape himself for the surgery. As soon as he meets those requirements, transplant surgery will be scheduled. We are so excited and thankful for his great gift. There are just no words……. We hope you all have a wonderful Thanksgiving holiday!

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@grammyx4, It has been a while since we heard from you. The saying, "Out of sight-Out of mind" is not true for me. I am thinking about you and wish you peace wherever your path has led you.
Hugs,
Rosemary

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Hi, I just joined Mayo Connect yesterday. I also just completed my initial paperwork to donate my kidney to my best friend. She is waiting to be contacted and I suspect they will then contact me. I have had the entire workup at Sharp Hosp. in San Diego and all was a go until they decided that, for them (change in chief of Staff), she was a risk. I have a large list of questions that I asked Sharp and will also ask Mayo when the time comes. I don't know if we are permitted to exchange emails on here but I would be more than willing to share my list of questions (and the answers I received from Sharp). It may help you make a decision. My friend is also my roommate so I see her struggles on a daily basis….that alone was enough for me to decide to donate but asking questions put the icing on the cake. I wish you well and can hopefully share my list.

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@mindyelvin, Welcome to Mayo Connect. I hope that your initial paper work will lead you towards the journey to be a living donor for your friend. It must be difficult to witness her daily struggles with her kidneys. You are a good friend, a good person. to consider doing this for her.

Our purpose on Connect is to share our experiences with each other, to ask questions and learn from each other, to support and encourage each other. There is a private message function if you and a member opt to share personal information such as email and phone. Or if there is something that you don't want to discuss on a public forum.

I want to share the Transplant Pages, where you can find materials for transplant recipients as well as living donors.
https://connect.mayoclinic.org/page/transplant/
We wish you well. We are here and we look forward to learning more about your journey to organ donation.
Rosemary

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I met a woman today (the phlebotomist who was playing vampire on me) and her husband was also a liver transplant recipient. He had a living donor and was transplanted at MELD 17. Is there an age limit to how soon they do the surgery if you have a living donor? That surprised because it was fairly low.
JK

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