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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Your in good hands

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@donnan

Health insurance determines where I live. I spent almost 51 years with brittle type one diabetes thus insurance wasn't fun. Since my one year anniversary of my transplant I had to move across the country to now be seen at JAX Mayo. I'm 62. Will be checking in with the transplant insurance department at Mayo 6 months prior to my 65th birthday. They will guide me as to which insurance includes them. Next I check out the plans to figure out which is best for prescriptions. You need to stay 5 steps ahead and that's time consuming but well worth it. I have found the JAX Mayo transplant – department to be absolutely wonderful.

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@donnan I have United Healthcare dual option planMedicare Advantage plan. It has worked 100% for me during my pursuit of liver transplant .
The Social worker team at Mayo Jax is superb. Hope your research brings good results.

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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

If you want to "Like" someone's post, just click on the "Heart" underneath the word "Reply" that will show up as a "Like." Teresa

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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 To like a post just touch the heart under the reply tab. Your screen will lighten for a couple of seconds then the heart turns dark. When the heart doesn't change you just wait until another time

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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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@rosemary That is so cool. It would be an honor to cross paths with members from Mayo Connect. That takes connect to an entirely new level

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@donnan It is presumptuous of me to think you're talking to me but I do so thank you. I completely understand wanting to know someone (preferably the one) from the other side & not getting so much as a hello. Just believe in your heart there is a good reason for the absence of communication at least in the eyes of the silent party. Looking through colored lenses has its advantages.

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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 That is reassuring to know. I had an appointment with my primary doctor yesterday. He ordered the mammogram, pap smear & HTLV test that are required to be a donor. The story of my life hurry up & wait but I'm happy to be moving forward.

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@beckyjohnson

Im so excited due to the new donor kidney transplant coordinator & my conversation earlier today. She asked questions that needed more clarification from the initial application. I'm also required to have a current colonoscopy, pelvic exam/ pap smear and mammogram. She is sending a blood pressure cuff to be worn continuously for a designated period of time (24 hrs I think). She also working on scheduling 3 days of appointments to include a lot of bloodwork, stress test, echocardiogram & much more that I cannot recall. I will also be meeting her in person along with counselor, donor advocate, surgery team, financial consultant & dietician to name a few. We are aiming for the last week of this month. Yea! A final thought as an altruistic donor it is very possible I will not get to meet my kidney recipient. For me this is a downside that I had already decided to accept thanks to this Mayo Connect discussion.

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Emotion 19: Excitement because my colonoscopy results are not only normal but also good for 10 years. Whoohoo

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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.

Jump to this post

@mrasmith15 to like someone's post
1. Click VIEW & REPLY in the email notification. This will take you directly to the message within the discussion.
2. Click the heart below the message.

Voila, it's that easy. Why don't you try liking my post to test it out. 🙂

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@beckyjohnson

Im so excited due to the new donor kidney transplant coordinator & my conversation earlier today. She asked questions that needed more clarification from the initial application. I'm also required to have a current colonoscopy, pelvic exam/ pap smear and mammogram. She is sending a blood pressure cuff to be worn continuously for a designated period of time (24 hrs I think). She also working on scheduling 3 days of appointments to include a lot of bloodwork, stress test, echocardiogram & much more that I cannot recall. I will also be meeting her in person along with counselor, donor advocate, surgery team, financial consultant & dietician to name a few. We are aiming for the last week of this month. Yea! A final thought as an altruistic donor it is very possible I will not get to meet my kidney recipient. For me this is a downside that I had already decided to accept thanks to this Mayo Connect discussion.

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Emotion 20: Worry that I may not be able to donate (considered normal) because my LDL is high.
Emotion 21: Relief – Doc recommends healthier diet & more exercise. Nothing to worry about. Yeah

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I've completed my 1st day of my 6 month check up after donation.
I came back to Mayo Rochester for it, although if it were a hardship for me, I could have done the tests at home. I don't know if I've already said this but it was easier for the recipient to fly me here & pay for my hotel than to figure out how to bill her insurance and have me test at home. That makes me sad because she's a highly intelligent, organized woman and the insurance companies still make it next to impossible for her to figure out how to use it most logically. It would have been cheaper for them too. I'm glad to be here though, I have complete faith in the care I receive at Mayo.

Day 1 for my check ups involved an 18 hour blood pressure cuff, 24 hour urine collection, lab work, renal cleaeance, meeting with a nurse & a social worker. Tomorrow will be dropping off the cuff & big orange jug, meeting with a nurse (not sure why) and getting clearance from the doctor.

I'll be sad to leave, knowing I probably (& hopefully) won't be back but I can't say enough good things about my experience both with kidney donation and at Mayo.

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My daughter is my donor. I’ll see if she will register and communicate with you. My transplant was 20 years ago.

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@beckyjohnson

Im so excited due to the new donor kidney transplant coordinator & my conversation earlier today. She asked questions that needed more clarification from the initial application. I'm also required to have a current colonoscopy, pelvic exam/ pap smear and mammogram. She is sending a blood pressure cuff to be worn continuously for a designated period of time (24 hrs I think). She also working on scheduling 3 days of appointments to include a lot of bloodwork, stress test, echocardiogram & much more that I cannot recall. I will also be meeting her in person along with counselor, donor advocate, surgery team, financial consultant & dietician to name a few. We are aiming for the last week of this month. Yea! A final thought as an altruistic donor it is very possible I will not get to meet my kidney recipient. For me this is a downside that I had already decided to accept thanks to this Mayo Connect discussion.

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Emotion 22: Joy because I recieved a letter to call about getting my blood pressure cuff so I called & made arrangements for it to be delivered next week.
Emotion 23: Frustration because I recieved an automated call stating I have preliminary testing T. June 26 @ 6:20am & to get my itenerary at http://www.mayoclinic.org, no physical address & no return call phone number. I could not find anything on the web site to help. When I tried to create an account I was asked for a 9 digit mayo code. Ugh. I will call my coordinator tomorrow.

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@beckyjohnson

Im so excited due to the new donor kidney transplant coordinator & my conversation earlier today. She asked questions that needed more clarification from the initial application. I'm also required to have a current colonoscopy, pelvic exam/ pap smear and mammogram. She is sending a blood pressure cuff to be worn continuously for a designated period of time (24 hrs I think). She also working on scheduling 3 days of appointments to include a lot of bloodwork, stress test, echocardiogram & much more that I cannot recall. I will also be meeting her in person along with counselor, donor advocate, surgery team, financial consultant & dietician to name a few. We are aiming for the last week of this month. Yea! A final thought as an altruistic donor it is very possible I will not get to meet my kidney recipient. For me this is a downside that I had already decided to accept thanks to this Mayo Connect discussion.

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Emotion 23: Excitement Today is day 24. For the 2nd day in a row I received an automated phone call scheduling a 2nd day of tests for W. June 27th @ 8am. And my daughter might go with me. I did not have time to call my coordinator for address & phone number info.

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@beckyjohnson

Im so excited due to the new donor kidney transplant coordinator & my conversation earlier today. She asked questions that needed more clarification from the initial application. I'm also required to have a current colonoscopy, pelvic exam/ pap smear and mammogram. She is sending a blood pressure cuff to be worn continuously for a designated period of time (24 hrs I think). She also working on scheduling 3 days of appointments to include a lot of bloodwork, stress test, echocardiogram & much more that I cannot recall. I will also be meeting her in person along with counselor, donor advocate, surgery team, financial consultant & dietician to name a few. We are aiming for the last week of this month. Yea! A final thought as an altruistic donor it is very possible I will not get to meet my kidney recipient. For me this is a downside that I had already decided to accept thanks to this Mayo Connect discussion.

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Emotion 24 (mistakenly called 23 for the 2nd time) is cool because it was on the 24th day of the donor process.
Emotion 25: Collective calm & surprise. Today I learned I have 5 days of testing (instead of 3) & my 9 digit member (create your (portal) account) number but Im still having trouble setting up the account. This time I have to fix it through patient registration. Things are moving fast now for sure.

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