Kidney transplant - The Journey from the Donor's Side

Posted by mauraacro @mauraacro, Jan 2, 2018

I’m headed to Rochester on the 10th for surgery on the 12th. I’m excited and nervous! I didn’t know the recipient but have gotten to “meet” her and some of her daughters through phone calls and emails.
I’ve had labs done at my doctor’s office and went to Mayo a few weeks ago for a million more tests. My case was presented to the donor board a few days before Christmas and I was approved and notified the same day. It seems like everything took so long and now is going so fast.
I’m interested in hearing from donors but haven’t had a lot of luck. It seems like the recipients are the ones who post the most, which gives me some info and reassurance but it would be nice to hear from the other side too.

@mrasmith15

Thank you all for the great information! I'm so glad I found this site & group! It's so nice to hear how everything is doing on the donor end. I am now officially a living kidney donor for my husband! I had my evaluation the first week of March and we found out last week. We haven't set a surgery date yet but we anticipate it will be this summer.

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@mrasmith15 that is so exciting for both of you!
I'll probably pass you in the halls at some point, my follow up is on the 18th & 19th. I'll be the one that takes a wrong turn in the subway and ends up back where I started. I get so turned around there. I very much appreciated the skyways, subways & tunnels in December & January but will be so glad to be able to walk around outside.
Luckily, the hospital is easier to navigate, the nurses are wonderful and the food is good!

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@mrasmith15

Thank you all for the great information! I'm so glad I found this site & group! It's so nice to hear how everything is doing on the donor end. I am now officially a living kidney donor for my husband! I had my evaluation the first week of March and we found out last week. We haven't set a surgery date yet but we anticipate it will be this summer.

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@mauraacro @mrasmith15 we will be there the 21 & 22. We will just miss you.

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@cehunt57

@beckyjohnson & @mauraacro I’m an organ recipient so maybe I shouldn’t weigh in here (deceased donor pancreas transplant). Now I’m waiting on a kidney transplant. I don’t know when and where it will come from. I’m listed, but am also looking for a living kidney donor. I am so grateful for my pancreas transplant. I had the opportunity to send a letter to the donor family to thank them, tell them about myself and extend an invitation for some follow up contact. This was done through a coordinator/social worker. I never got any response back. I’m just saying most recipients would like to meet &/or know something about the donor. It must be comfortable & agreeable for everyone involved. Mayo has so much experience with every kind of scenario I’m sure they will sort it out in the proper time and way for everyone’s best interest. What you are trying to do and have done is a tremendous thing. Thank you.

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@cehunt57 @mauraacro 1st thank you very much for sharing. 2nd as a donor in process I'm always interested in knowing what the recipients thoughts are about donors. There is so much information out there coming from & about recipients but very little in comparison coming from & about donors. It is comforting & reassuring to believe most recipients would like to know their donor.

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@cehunt57

@beckyjohnson & @mauraacro I’m an organ recipient so maybe I shouldn’t weigh in here (deceased donor pancreas transplant). Now I’m waiting on a kidney transplant. I don’t know when and where it will come from. I’m listed, but am also looking for a living kidney donor. I am so grateful for my pancreas transplant. I had the opportunity to send a letter to the donor family to thank them, tell them about myself and extend an invitation for some follow up contact. This was done through a coordinator/social worker. I never got any response back. I’m just saying most recipients would like to meet &/or know something about the donor. It must be comfortable & agreeable for everyone involved. Mayo has so much experience with every kind of scenario I’m sure they will sort it out in the proper time and way for everyone’s best interest. What you are trying to do and have done is a tremendous thing. Thank you.

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@mauraacro @cehunt57 Two thumbs up for "Of course you should weigh in here!" For sure things would be much easier if everyone was on the same page. It is sad that a two way connection didn't happen for you. A possible reason could be it's too painful for the family dealing with the death of a loved one.

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@mrasmith15

Thank you all for the great information! I'm so glad I found this site & group! It's so nice to hear how everything is doing on the donor end. I am now officially a living kidney donor for my husband! I had my evaluation the first week of March and we found out last week. We haven't set a surgery date yet but we anticipate it will be this summer.

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@mrasmith15 That is a beautiful story. Happy journey to all of you. Improving the quality of so many lives is indeed great. Thank you for sharing this uplifting story.

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@mrasmith15

Thank you all for the great information! I'm so glad I found this site & group! It's so nice to hear how everything is doing on the donor end. I am now officially a living kidney donor for my husband! I had my evaluation the first week of March and we found out last week. We haven't set a surgery date yet but we anticipate it will be this summer.

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@mauraacro Once again your humor shines. Thank you for the giggle.

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@mrasmith15

Thank you all for the great information! I'm so glad I found this site & group! It's so nice to hear how everything is doing on the donor end. I am now officially a living kidney donor for my husband! I had my evaluation the first week of March and we found out last week. We haven't set a surgery date yet but we anticipate it will be this summer.

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@jodeej @mauraacro @mrasmit You just have to love Mayo Connect because it is like having a very large extended family with the caveat that we have something major in common by choice

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@beckyjohnson

I decided to be a donor this week although I've considered it at least 2 yrs. & have done some research. Because I need to do this during the FL primary school year summer break I'm concerned with timely progress. I did the online health questionnaire as well as left a voicemail message yesterday morning stating my intention.
Is donating during this summer break a realistic goal?

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@cehunt57 MY GOODNESS SHE REALLY IS AN ANGEL ON EARTH! Everything we take for granted from the wheel to deep sea/ outer space travel, from industrial agriculture to modern medicine began with someone thinking outside of the box. This often came at the expense of that person being considered crazy if not insane. The cream always rises & hindsight is 20/20. Your girl is a miracle because hearts like that are greater than one in a million.

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@mauraacro

@beckyjohnson I don't see why you wouldn't be able to switch from an altruistic donor to a named one, especially this early in the game.
Transplants are new to us but not to Mayo so I bet they just take the info given to them and run with it. If you add in new information, I'm sure they can figure out how to make it happen.

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@mauraacro What an excellent point. Mayo has literally been doing transplants as long as I've been alive. It is safe to say I've learned a thing or few about life so I can only imagine what the cumulative transplant teams have learned. I put in a call to my coordinator today but my landline has been having "do not work" issues off & on for the past 2 weeks so they couldn't reach me. Cell service is practically useless in these woods. Ugh. Thanks for your thoughts.

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@mauraacro

@beckyjohnson I had labs sent to my home in November and went to Mayo for evaluation/testing in December. Surgery was Jan 12 and I was back to work on the 29th, so it is possible. It could have been shorter but because of holidays & my schedule the evaluation was delayed a few weeks. I got some routine things out of the way before I went for the that trip. Routine was yearly exam, mammogram, colonoscopy & flu shot.

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@mauraacro Did you have to have these tests before your donation? I have to have a current colonoscopy (states how long before next one is recommended, preferably 10 years from date of test) as well as a pap smear & mammogram within the past 12 months

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@cehunt57

@beckyjohnson & @mauraacro I’m an organ recipient so maybe I shouldn’t weigh in here (deceased donor pancreas transplant). Now I’m waiting on a kidney transplant. I don’t know when and where it will come from. I’m listed, but am also looking for a living kidney donor. I am so grateful for my pancreas transplant. I had the opportunity to send a letter to the donor family to thank them, tell them about myself and extend an invitation for some follow up contact. This was done through a coordinator/social worker. I never got any response back. I’m just saying most recipients would like to meet &/or know something about the donor. It must be comfortable & agreeable for everyone involved. Mayo has so much experience with every kind of scenario I’m sure they will sort it out in the proper time and way for everyone’s best interest. What you are trying to do and have done is a tremendous thing. Thank you.

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It is because of you, other living donors and deceased donors that I have been given a new life. I haven’t heard back from my donors family. I do pray for them every day but I would love to meet them. Maybe someday.

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@mauraacro

@beckyjohnson I had labs sent to my home in November and went to Mayo for evaluation/testing in December. Surgery was Jan 12 and I was back to work on the 29th, so it is possible. It could have been shorter but because of holidays & my schedule the evaluation was delayed a few weeks. I got some routine things out of the way before I went for the that trip. Routine was yearly exam, mammogram, colonoscopy & flu shot.

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@beckyjohnson I did have those done before I went for the full evaluation but they were due anyway, (had been procrastinating) so I went in under my insurance.
I'm not positive but I think I could have done them under the recipient's insurance if it wasn't something covered under my regular well check/preventative care plan. @onecentwalsh may be able to tell you how insurance work as an altruistic donor.
When you decide to become a donor, you are taken great care of. Every part of you is checked out, tested, retested. You will be given information about things you didn't even know you had questions for. Very few of your exams or tests relate to the recipient. They are all for you to make sure that you know what's going on, don't have any reservations, can handle surgery well and will live a long life with 1 kidney.

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@mrasmith15

Thank you all for the great information! I'm so glad I found this site & group! It's so nice to hear how everything is doing on the donor end. I am now officially a living kidney donor for my husband! I had my evaluation the first week of March and we found out last week. We haven't set a surgery date yet but we anticipate it will be this summer.

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I recently met one of our members while I was at Mayo for my annual checkup! We were in a waiting room and chatting when she recognized me from my teeny picture! …So it is always a possibility that you might see someone.
Safe travels to all of you.
Rosemary

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@mrasmith15

Thank you all for the great information! I'm so glad I found this site & group! It's so nice to hear how everything is doing on the donor end. I am now officially a living kidney donor for my husband! I had my evaluation the first week of March and we found out last week. We haven't set a surgery date yet but we anticipate it will be this summer.

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I can't figure out how to "Like" anyone's post! So thank you to everyone! @mauraacro @rosemarya @beckyjohnson

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@mrasmith15

Thank you all for the great information! I'm so glad I found this site & group! It's so nice to hear how everything is doing on the donor end. I am now officially a living kidney donor for my husband! I had my evaluation the first week of March and we found out last week. We haven't set a surgery date yet but we anticipate it will be this summer.

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After spending 4 days at Mayo Jax for my evaluation, I am waking up this morning still in awe of the magnitude of care given there. Disneyworld for the sick!
Everyone was so nice..like they were born on a different planet… I had a multitude of tests completed during those days along with superior educational classes and interviews with specialists to determine my status.
Our accommodations at the Holiday Inn Express were excellent. It was clean quiet and friendly. They had a full breakfast and evening happy hour with cheese and crackers and a variety of drinks. They also had a shuttle to Mayo which was only 10 minutes away. Definitely our home port for short stays.
I will share more as I can. My daughter is coming from NJ on Sunday and we are going to daytrip to Mayo for the last appointments on Monday.
It's an exciting an anxious time of my life…but I know I am doing the right thing and am in the best hands.
Everything happens for a reason…….carry on…..

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