Living Donor Process

Posted by ek101085 @ek101085, Thu, Apr 11 8:02pm

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!!

Yay you! Living donors are our favorite people around here! Great to meet you. My living donor was VERY proactive and called the donor line or the nurse coordinator whenever she has questions. She went from questionnaire to being my donor in 6 weeks (she was in perfect athletic condition which made a big difference). One possibility of why you haven't gotten the call could be that there is another donor ahead of you and they can't tell you. Call in, see if you can get your questions answered. Good programs expect donors to be motivated so the hospital staff will understand. Also just random advice, stay hydrated, not only is a lot of water (2 liters a day) good for you but it will also help your testing go more smoothly. Blessings to you both. Sounds like you are an amazing person to be helping your sister by donating the gift of life. Keep us posted.

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@ek101085, Welcome to Connect. I am happy that you have already met @jolinda, who is able to speak from her own experience with living donation. I have an organ transplant, however my organs are from a deceased donor. My experience is to share that organ donation does work.

I would like to share a couple of discussions from the Transplant Group where you can read what others are sharing about their exoeriences. Feel free to join in anywhere. Of course I also welcome any questione right here in this discussion, too.
Kidney transplant: Thinking of becoming a donor – https://connect.mayoclinic.org/discussion/kidney-transplant-3/

Kidney transplant – The Journey from the Donor's Side – https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/

If you are not yet familiar with Transplant Pages, I highly recommend – https://connect.mayoclinic.org/page/transplant/

I send my hope that you get the response that you want.

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Congratulations on making the decision to donate!
I had questions come up during my journey and called Mayo directly. From what I remember, a nurse/social worker will be the one you talk to initially, so that's who I would try to reach.
I don't know how it works when the recipient is family but Mayo would not give me any info on my recipient including other potential donors or her schedule until it was time for the surgery. Even then, they told me it was based on her surgeon's schedule.
Your sister still probably has a million tests that need to be done before surgery that will take time to schedule and complete. There could also be someone that is already testing as a donor for her. Or the social worker could be busy, which is great if you think about it.
While I was waiting for my full evaluation at Mayo, I got routine medical appointments done to save time in MN. I had a well check, mammogram and colonoscopy, as well as flu and tetanus shots. If you need those anyway, this waiting time is a good chance to get them done.
I had many random non medical questions, so feel free to ask me as I probably asked someone the same thing. Good luck!

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Thank you everyone for the information! I got the call from the nurse this morning! Now the process really begins!!!!

Lots of information to look over. I will be definitely be in touch, I'm sure there will be lots of random questions from me in the future.

Thank you all again. I'm glad and very appreciative to have such well informed and experienced individuals to reach out to while going through this process!

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@ek101085, This is awesome news!

Liked by cehunt57

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@ek101085 Just want to share with you that my daughter was my living donor. She was very enthusiastic about being able to do it. We were a good match, but then I thought we should be, since I helped create that kidney and it had been in me before. A week after our surgery, she was dancing in the living room of the home we were renting in Rochester, and feeling very good. The only pain she complained about was the pain in her shoulders for a couple of days from the air that is used to inflate the abdomen. It is slowly absorbed, i guess. Mayo is so appreciative of the donors and they will always tell you how wonderful it is for you to be a donor. How awesome you are to be willing to donate!

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@mauraacro

Congratulations on making the decision to donate!
I had questions come up during my journey and called Mayo directly. From what I remember, a nurse/social worker will be the one you talk to initially, so that's who I would try to reach.
I don't know how it works when the recipient is family but Mayo would not give me any info on my recipient including other potential donors or her schedule until it was time for the surgery. Even then, they told me it was based on her surgeon's schedule.
Your sister still probably has a million tests that need to be done before surgery that will take time to schedule and complete. There could also be someone that is already testing as a donor for her. Or the social worker could be busy, which is great if you think about it.
While I was waiting for my full evaluation at Mayo, I got routine medical appointments done to save time in MN. I had a well check, mammogram and colonoscopy, as well as flu and tetanus shots. If you need those anyway, this waiting time is a good chance to get them done.
I had many random non medical questions, so feel free to ask me as I probably asked someone the same thing. Good luck!

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@mauraacro I am so grateful to you for having shared your donor experience on Connect.

Remember when you first came to the community hoping to find a written account of someone's donor experience play-by-play. Back then there wasn't one, so you jumped right in and said, "I'll fix that and journal my experience for others." So incredible. And now you see how it is helping @ek101085 and countless others. You help answer those questions that people can't find in brochures or even the staff. It's the knowledge that only the people who have been there have.

EK – as you prepare to be a donor, I invite you to add your version of the journey to Mauro's. By collecting experiences, future donors will know better what to expect. Please add your journey here:

Kidney transplant – The Journey from the Donor's Side – https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/

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@colleenyoung thank you for that. It is important to me to show potential donors what it's like. I think if more donors tell their story, it makes it more "real" to those wondering about donation. The easier donations, like mine, the ones that don't work out because of medical reasons or they changed their minds and the ones that end up more difficult are all important in showing what really goes on for a donor. Sometimes hearing about the worst part of someone's journey isn't half as bad as someone else's imagination.
Mayo has transplants down to the last detail from the medical side and they took excellent care of me but I also needed to hear about the comfort of high waist undies after surgery, extra long phone chargers and if it hurts really bad or just sort of bad. It was nice to be able to freak out here, without my family, the doctors or the recipient think I wanted to back out.
I also like to think that potential recipients read about it so they have a perspective from the non medical side to offer someone that may want to help them.

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Hi everyone Just thought I'd throw out an update. Today I got the call that my blood kit was received and tested…and I'm apparently a good match for my sister. My living donor evaluation has been scheduled for 5/14-5/16!!

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@ek101085

Hi everyone Just thought I'd throw out an update. Today I got the call that my blood kit was received and tested…and I'm apparently a good match for my sister. My living donor evaluation has been scheduled for 5/14-5/16!!

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@ek101085 People like you amaze me and encourage me. My sister got her call this week also. She is scheduled for her living donor evaluation at Mayo on June 19-21. I am currently on the inactive transplant list. I am scheduled for a re-evaluation on June 4-5. If that goes good, I should be moved to the active transplant list. I hope and pray that your evaluation goes well.

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@ek101085

Hi everyone Just thought I'd throw out an update. Today I got the call that my blood kit was received and tested…and I'm apparently a good match for my sister. My living donor evaluation has been scheduled for 5/14-5/16!!

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@ek101085 I hope your evaluation goes well. What a loving time for you and your sister. I think it's wonderful when people are so giving and take it upon themselves to do that for someone. You and your sister will always have an incredible bond.
JK

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@ek101085

Hi everyone Just thought I'd throw out an update. Today I got the call that my blood kit was received and tested…and I'm apparently a good match for my sister. My living donor evaluation has been scheduled for 5/14-5/16!!

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@ek101085, I just returned from Mayo Rochester from my annual post transplant evaluation. I want to wish you a successful evaluation and assure you that my experience with the Mayo Rochester Kidney transplant dept has been outstanding. In fact every test that you will have scheduled is handled in a professional manner and always patient centered. You are going to be in a good place in any of the Mayo campuses.
Are you going to be in Rochester? If you are traveling from a distance, be sure to check out the Gift of Life Transplant House. Here is information about the transplant housing at all 3 Mayo locations.- Transplant Hospitality Houses – A Home Away From Home
https://connect.mayoclinic.org/page/transplant/newsfeed-post/transplant-hospitality-houses-a-home-away-from-home/

If you have any questions about your evaluation, let me know and i will do my best to help you or to connect you with a member who can help you.

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@marvinjsturing

@ek101085 People like you amaze me and encourage me. My sister got her call this week also. She is scheduled for her living donor evaluation at Mayo on June 19-21. I am currently on the inactive transplant list. I am scheduled for a re-evaluation on June 4-5. If that goes good, I should be moved to the active transplant list. I hope and pray that your evaluation goes well.

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@marvinjsturing,You and your sister have 2 very good dates for your scheduled evaluations – June 5 is my son's birthday, and June 21 is my wedding anniversary. I hope all will will point in your favor. I know that you have been dedicated to getting to this point ion your transplant journey. If there is anything that I can do to help you prepare or answer any questions or concerns, just let me know and I will try to connect you with another member with experience, or share a link.

I think I remember that you are headed to Rochester. I encourage you ans sister to look into the Gift of Life Transplant House. https://gift-of-life.org/

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@rosemarya

@marvinjsturing,You and your sister have 2 very good dates for your scheduled evaluations – June 5 is my son's birthday, and June 21 is my wedding anniversary. I hope all will will point in your favor. I know that you have been dedicated to getting to this point ion your transplant journey. If there is anything that I can do to help you prepare or answer any questions or concerns, just let me know and I will try to connect you with another member with experience, or share a link.

I think I remember that you are headed to Rochester. I encourage you ans sister to look into the Gift of Life Transplant House. https://gift-of-life.org/

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@rosemarya June 5 is special to me for another reason. It is the anniversary of my Whipple procedure. When we came to Rochester in August for my initial kidney transplant evaluation, we were too busy to stop at Gift of Life. When we came in December for my PET scan for my cancer, my wife and I toured the Gift of Life House. We are hoping they will have a room available for us when I get my transplant. As a donor, are my sister and her husband eligible to stay at the Gift of Life?

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@marvinjsturing

@rosemarya June 5 is special to me for another reason. It is the anniversary of my Whipple procedure. When we came to Rochester in August for my initial kidney transplant evaluation, we were too busy to stop at Gift of Life. When we came in December for my PET scan for my cancer, my wife and I toured the Gift of Life House. We are hoping they will have a room available for us when I get my transplant. As a donor, are my sister and her husband eligible to stay at the Gift of Life?

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@marvinjsturing, The Gift of Life House is for transplant recipient and a caregiver; and for donor and caregiver. So that would be 2 separate bed/bathrooms, and community living areas. You have to see it to believe it! The moment you walk in the door there is a feeling of hope and peace. You are both eligible to stay there during the evaluation as well as the transplant time, and anytime you go to Rochester for follow-ups. Why don't you call them ahead of time to get more specific details? https://gift-of-life.org/

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