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mauraacro
@mauraacro

Posts: 79
Joined: Dec 28, 2017

Kidney transplant - The Journey from the Donor's Side

Posted by @mauraacro, Tue, Jan 2 4:27pm

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.

REPLY

Hi @mauraacro
Thank you for starting this discussion to share your perspective of living donor kidney transplant, namely from the donor’s perspective. I look forward to learning from you the stuff that you don’t learn from patient pamphlets and medical visits. If you don’t mind, I’d like to learn more details about the evaluation process. You said you had a million tests. What were those tests and how were they organized? And more importantly, if you were starting this process again, what do you wish you had known?

I’m sure I’ve forgotten some of the things but I’ll try to go in order of how it went for me and maybe it will jog my memory as I go.
In October, I signed up on the breeze Mayo site to test as a donor for a named recipient. I was contacted by someone within a few days and she asked various questions about my health and health history. She said if I got things like my colonoscopy, mammogram and pap out of the way, things would go faster, so I had those done. I received a blood lab kit in the mail, my doctor did the draw and I shipped it to Mayo.
I didn’t match on all of the things that can match but she had no antibodies that would reject my kidney so I passed that part. I think I was shipped 2 more blood draw labs and a 24 hour urine collection kit that I did here and shipped back.
The scheduling nurse set up my appointments at Mayo, I still can’t believe how organized and well run it is. I got there at 6AM on December 12th for blood and urine testing and needed to go back for 3 more of those throughout the 1st day. I met with the nephrologist, received an 18 hour blood pressure cuff, had a renal function test, met the surgeon, the donor advocate, financial services and the donor coordinator,
The second day I had a CT scan, got the results of the BP cuff, met with the social worker and a nutritionist, had an electrocardiogram and a stress test, more blood draws, a chest xray and finally back to the doctor for the results. I was asleep in his office in the 4 minutes it took him to come in to see me. We went over my results and he said he would recommend me to the donor board as a candidate.
After I got home, I received calls from the advocate and the social worker. They were checking and and seeing how I was doing and if I was still interested after I had some down time. A few days later I got the call that I was accepted and we talked about a good date for my schedule. The recipient’s side does the surgery scheduling and they called me that day with confirmation.
I’ve since had 1 more blood draw that I shipped to Mayo but I think that’s all I have left to do here besides pack and fill out paperwork. So far, for my pre-op in Rochester, I have 2 more blood and urine tests scheduled as well as appointments with the doctor, surgeon and advocate.
If I could do anything different, I would eat more (or better) when I wasn’t fasting and get to bed earlier because it was hard to sleep with anticipation for the tests. I had a paper schedule and made notes on it that said things like, “fast after 7, 1 cup of water between 12-5. Eat between 9-945. 2 hour fast for test at 11:45” that was invaluable because there were a lot of eat/don’t eat on my instructions. I got to some appointments as much as an hour early and sometimes they were able to take me and sometimes not. I think I would have felt more rested if I had, well, rested during those times instead of trying to beat the clock. I learned that the elevators in the Charlton building are super slow but the volunteer on the lower level is a font of Rochester information.
This was probably way more than you meant for me to reply with but it was nice to get it out!

I donated to my sister in August 2015. I had some blood/urine tests and office visit the day prior to surgery. I picked up a Rx for a laxative to clear my GI tract the night prior. I thought it would keep me up all night but it didn’t. The next morning my sister and I both reported around same time and our pre-op rooms were across the hall from each other. I gowned up and they took vitals then took me down to holding area for surgery where I talked to members of anesthesia and surgery team. My sister came down shortly after me and they put our beds next to each other so we could talk. Then it was off to the OR, back to recovery and eventually my room. I do remember seeing my sister in recovery. The nurses were very good about keep us in close proximity to each other. You will have a urine catheter in for approx 24 hours so they can closely monitor your urine output. I was on IV pain meds for about a day. I switched to orals for about 4 days then just plain Tylenol. I think I was discharged on day 3 or 4 and no further follow-up for a couple months then six months and one year. The social worker and transplant coordinator both checked in on me the first couple weeks. It will be hard to get in/out of bed. Use the “roll” technique they teach you in the hospital. I slept in the recliner a few nights though I was at the mercy of someone to put the footrest down if I needed to get up. Pulling open doors was also painful. I used the pillow they will give you while riding in the car. Pack some comfy loose fitting pants for post-op as don’t want anything tight fitting over incision until it heals. Best of luck on the 12th…you are doing a great thing!

@mauraacro

I’m sure I’ve forgotten some of the things but I’ll try to go in order of how it went for me and maybe it will jog my memory as I go.
In October, I signed up on the breeze Mayo site to test as a donor for a named recipient. I was contacted by someone within a few days and she asked various questions about my health and health history. She said if I got things like my colonoscopy, mammogram and pap out of the way, things would go faster, so I had those done. I received a blood lab kit in the mail, my doctor did the draw and I shipped it to Mayo.
I didn’t match on all of the things that can match but she had no antibodies that would reject my kidney so I passed that part. I think I was shipped 2 more blood draw labs and a 24 hour urine collection kit that I did here and shipped back.
The scheduling nurse set up my appointments at Mayo, I still can’t believe how organized and well run it is. I got there at 6AM on December 12th for blood and urine testing and needed to go back for 3 more of those throughout the 1st day. I met with the nephrologist, received an 18 hour blood pressure cuff, had a renal function test, met the surgeon, the donor advocate, financial services and the donor coordinator,
The second day I had a CT scan, got the results of the BP cuff, met with the social worker and a nutritionist, had an electrocardiogram and a stress test, more blood draws, a chest xray and finally back to the doctor for the results. I was asleep in his office in the 4 minutes it took him to come in to see me. We went over my results and he said he would recommend me to the donor board as a candidate.
After I got home, I received calls from the advocate and the social worker. They were checking and and seeing how I was doing and if I was still interested after I had some down time. A few days later I got the call that I was accepted and we talked about a good date for my schedule. The recipient’s side does the surgery scheduling and they called me that day with confirmation.
I’ve since had 1 more blood draw that I shipped to Mayo but I think that’s all I have left to do here besides pack and fill out paperwork. So far, for my pre-op in Rochester, I have 2 more blood and urine tests scheduled as well as appointments with the doctor, surgeon and advocate.
If I could do anything different, I would eat more (or better) when I wasn’t fasting and get to bed earlier because it was hard to sleep with anticipation for the tests. I had a paper schedule and made notes on it that said things like, “fast after 7, 1 cup of water between 12-5. Eat between 9-945. 2 hour fast for test at 11:45” that was invaluable because there were a lot of eat/don’t eat on my instructions. I got to some appointments as much as an hour early and sometimes they were able to take me and sometimes not. I think I would have felt more rested if I had, well, rested during those times instead of trying to beat the clock. I learned that the elevators in the Charlton building are super slow but the volunteer on the lower level is a font of Rochester information.
This was probably way more than you meant for me to reply with but it was nice to get it out!

Jump to this post

That was such great information for me to read, thank you. I’m heading down to mayo January 29-31 for all my testing, as a non directed donor.

@mauraacro

I’m sure I’ve forgotten some of the things but I’ll try to go in order of how it went for me and maybe it will jog my memory as I go.
In October, I signed up on the breeze Mayo site to test as a donor for a named recipient. I was contacted by someone within a few days and she asked various questions about my health and health history. She said if I got things like my colonoscopy, mammogram and pap out of the way, things would go faster, so I had those done. I received a blood lab kit in the mail, my doctor did the draw and I shipped it to Mayo.
I didn’t match on all of the things that can match but she had no antibodies that would reject my kidney so I passed that part. I think I was shipped 2 more blood draw labs and a 24 hour urine collection kit that I did here and shipped back.
The scheduling nurse set up my appointments at Mayo, I still can’t believe how organized and well run it is. I got there at 6AM on December 12th for blood and urine testing and needed to go back for 3 more of those throughout the 1st day. I met with the nephrologist, received an 18 hour blood pressure cuff, had a renal function test, met the surgeon, the donor advocate, financial services and the donor coordinator,
The second day I had a CT scan, got the results of the BP cuff, met with the social worker and a nutritionist, had an electrocardiogram and a stress test, more blood draws, a chest xray and finally back to the doctor for the results. I was asleep in his office in the 4 minutes it took him to come in to see me. We went over my results and he said he would recommend me to the donor board as a candidate.
After I got home, I received calls from the advocate and the social worker. They were checking and and seeing how I was doing and if I was still interested after I had some down time. A few days later I got the call that I was accepted and we talked about a good date for my schedule. The recipient’s side does the surgery scheduling and they called me that day with confirmation.
I’ve since had 1 more blood draw that I shipped to Mayo but I think that’s all I have left to do here besides pack and fill out paperwork. So far, for my pre-op in Rochester, I have 2 more blood and urine tests scheduled as well as appointments with the doctor, surgeon and advocate.
If I could do anything different, I would eat more (or better) when I wasn’t fasting and get to bed earlier because it was hard to sleep with anticipation for the tests. I had a paper schedule and made notes on it that said things like, “fast after 7, 1 cup of water between 12-5. Eat between 9-945. 2 hour fast for test at 11:45” that was invaluable because there were a lot of eat/don’t eat on my instructions. I got to some appointments as much as an hour early and sometimes they were able to take me and sometimes not. I think I would have felt more rested if I had, well, rested during those times instead of trying to beat the clock. I learned that the elevators in the Charlton building are super slow but the volunteer on the lower level is a font of Rochester information.
This was probably way more than you meant for me to reply with but it was nice to get it out!

Jump to this post

@onecentwalsh, Welcome to Mayo Clinic Connect. I am very happy to meet you. Since you posted in Kidney Transplant discussion, I am guessing that you are testing to be a kidney donor. Is that correct?
I would like to take this opportunity to wish you a safe trip. And I pray for a successful round of testing. Thank you for what you are about to do! People like you are the reason that patients in need of a life-saving organ transplant are able to hold on and to hope until a match is available to them. I am a liver/kidney recipient from an anonymous deceased donor, my hero.

I am happy that our amazing members have been able to provide you with great information from their own experiences. You might be interested in looking at the Living Donor Discussion: https://connect.mayoclinic.org/discussion/living-donor/?pg=1
and The Journal from the Donor-side: https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/

What other questions would you like to ask?
Hugs and Hope,
Rosemary

@mauraacro

I’m sure I’ve forgotten some of the things but I’ll try to go in order of how it went for me and maybe it will jog my memory as I go.
In October, I signed up on the breeze Mayo site to test as a donor for a named recipient. I was contacted by someone within a few days and she asked various questions about my health and health history. She said if I got things like my colonoscopy, mammogram and pap out of the way, things would go faster, so I had those done. I received a blood lab kit in the mail, my doctor did the draw and I shipped it to Mayo.
I didn’t match on all of the things that can match but she had no antibodies that would reject my kidney so I passed that part. I think I was shipped 2 more blood draw labs and a 24 hour urine collection kit that I did here and shipped back.
The scheduling nurse set up my appointments at Mayo, I still can’t believe how organized and well run it is. I got there at 6AM on December 12th for blood and urine testing and needed to go back for 3 more of those throughout the 1st day. I met with the nephrologist, received an 18 hour blood pressure cuff, had a renal function test, met the surgeon, the donor advocate, financial services and the donor coordinator,
The second day I had a CT scan, got the results of the BP cuff, met with the social worker and a nutritionist, had an electrocardiogram and a stress test, more blood draws, a chest xray and finally back to the doctor for the results. I was asleep in his office in the 4 minutes it took him to come in to see me. We went over my results and he said he would recommend me to the donor board as a candidate.
After I got home, I received calls from the advocate and the social worker. They were checking and and seeing how I was doing and if I was still interested after I had some down time. A few days later I got the call that I was accepted and we talked about a good date for my schedule. The recipient’s side does the surgery scheduling and they called me that day with confirmation.
I’ve since had 1 more blood draw that I shipped to Mayo but I think that’s all I have left to do here besides pack and fill out paperwork. So far, for my pre-op in Rochester, I have 2 more blood and urine tests scheduled as well as appointments with the doctor, surgeon and advocate.
If I could do anything different, I would eat more (or better) when I wasn’t fasting and get to bed earlier because it was hard to sleep with anticipation for the tests. I had a paper schedule and made notes on it that said things like, “fast after 7, 1 cup of water between 12-5. Eat between 9-945. 2 hour fast for test at 11:45” that was invaluable because there were a lot of eat/don’t eat on my instructions. I got to some appointments as much as an hour early and sometimes they were able to take me and sometimes not. I think I would have felt more rested if I had, well, rested during those times instead of trying to beat the clock. I learned that the elevators in the Charlton building are super slow but the volunteer on the lower level is a font of Rochester information.
This was probably way more than you meant for me to reply with but it was nice to get it out!

Jump to this post

Feel free to ask me any questions about the testing. If you haven’t gotten your schedule yet, brace yourself. I remember seeing an appointment at 3pm and one at 315 and thinking, no way is this going to work but it did. Also, I patched together an outfit to sleep in while I was wearing the 18 hour BP cuff. It was not beautiful but it stayed on all night and I didn’t have to repeat the test. Let me know if you want that info -or any other weird piece of knowledge. The nurse and social worker both are great sources of info but it is the odd, non medical stuff that I find helpful.

Thank you! Do you remember about how long it was from gowning up to actually going in for surgery? If it’s a few hours with a lot of down time, I’m worried I’ll be super stressed, I’m not patient and I’m an overthinker, that seems like an uncomfortable pre-surgery situation for me.
With regard to the loose fitting clothing, I bought some that are 1 size up (and they’re stretchy), I heard that my abdomen will be distended for awhile, is awhile a few days or a few weeks? Does the incision take a long time to heal? I can’t decide if I should buy a few more things.
All of these are such time related questions, none are hugely important if you don’t remember but thanks for reading.

@mauraacro, There are a lot of nice shops in the Mayo complex, and nearby, and there is Apache Mall that used to have a real nice Penneys. So you will have many options available to wait and see how your abdomen does. Just a suggestion.
Hint: Take a favorite pair of earrings, favorite lipstick, and your favorite lotion. It is super nice to have those comfort things afterwards:-)
Rosemary

@rosemarya

@mauraacro, There are a lot of nice shops in the Mayo complex, and nearby, and there is Apache Mall that used to have a real nice Penneys. So you will have many options available to wait and see how your abdomen does. Just a suggestion.
Hint: Take a favorite pair of earrings, favorite lipstick, and your favorite lotion. It is super nice to have those comfort things afterwards:-)
Rosemary

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Thanks for the advice. One of the many great parts of this for me will be some much needed downtime, I think I’ll aim for a few “spa days”, I’ll bring all of those trial sized masks & lotions I never use!

I will follow up after I’ve processed a bit, this has gone so quickly. I said I’d post from the hospital, I can’t do that because I’ve already been released! My surgery was at 8 yesterday morning (Friday) and I was cleared to leave around noon today (Saturday). I had the option to stay tonight but my labs and “output” were good and there was no medical reason I needed to stay. The recipient is also doing well, she will be out Monday.
I’m going to eat & go back to bed, I’ll fill in more details later

@mauraacro, Amazing!
Your priority is to take care of yourself.

Gentle hug and prayers for you and your recipient, while you both recover.
Rosemary

@rosemarya

@mauraacro, Amazing!
Your priority is to take care of yourself.

Gentle hug and prayers for you and your recipient, while you both recover.
Rosemary

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I feel so much more rested and less fuzzy now. I’ve had some time to reflect on everything that happened from arriving in Rochester, to surgery to walking around in amazement that an organ was removed from my body, put into someone else and we are both doing great! I know that kidney donation is not new. I knew the logistics before I even had the initial phone screening. I had a great team that explained every single thing that would happen, I talked to people, I read, I prayed but I am still in awe that this procedure exists and works.
I am doing so well, a bit sore but more scared that something may hurt than actual pain. I get tired easily. The recipient noticed a difference that night! Of course she’s sore and has many more tests than I had but she’s feeling better, taking less medication and walking around.
I will provide more details about the actual procedure, timing etc if anyone has questions but I wanted to make sure I came back here to thank you guys for letting me talk through it and the wonderful Mayo team for all they do.

@rosemarya

@mauraacro, Amazing!
Your priority is to take care of yourself.

Gentle hug and prayers for you and your recipient, while you both recover.
Rosemary

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So many prayers for your continued healing. I’m so glad to read your journey, as I feel that I’m just a few steps behind pending how all the testing goes at the end of the month. What a blessing you have been to your recipient and to those who will hear your story.
Rest, relax, heal!

On Friday, it will be 3 weeks since I’ve donated. Because of emotions, travel and adjusting back home, it seems like the surgery was months ago.
I went back to work yesterday on a limited schedule and it went well. The advocate told me that my body will say when I have done too much, that worried me because I thought I may miss my body’s cue or that I would all of a sudden be in a lot of pain. For me, when I’ve overdone it a bit, I get tired and my abdomen gets a little tight, not enough to hurt, enough to remind me that it’s there and I need to slow down and rest. The hardest part for me is the 10# lifting restriction, everything in my life seems to weigh more that 10#.
After typing that, I realize that the lifting restriction isn’t really the hardest part, asking for help is. I don’t look any different than I did a few weeks ago so asking for help bringing a bag of groceries to my car is embarrassing and enlightening. How many people have I dismissed as lazy or entitled because they won’t carry their own 15# bag of produce and milk to their car? That is so embarrassing to admit, I’m glad I have the opportunity to change my thinking.
The recipient is doing great except for getting the flu! Somewhere between going in for pre surgery appointments and back for tests she contracted the flu. Luckily, Mayo caught it quickly and she received great care. She went home Friday and is adjusting to life without dialysis. She’s disappointed that the flu slowed down her progress but her kidney numbers are good and she is feeling stronger every day.

@amberann, I would like to invite you to view the conversations in this group. I invite you to ask any questions that you might have. That is what we do here on Connect – ask questions and support each other by sharing our experiences.
Rosemary

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