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.

@jgiovann

Hello!
I was looking for firsthand experiences from living donors and stumbled across this website. Would anyone who has been a living donor personally mind telling me about what your experience was like the day of surgery and during your recovery? How much pain were you in? Any advice on how to make it go as well as possible?
After the grueling process of testing, I am finally cleared as a donor. My mother has PKD and now has ESRD and just started dialysis. We are not a direct match so we joined the Paired Donor Exchange System. They have found a chain for us and we are planning on having surgery Friday 12/6/19. I am very, very excited that after such a long road there is light at the end of the tunnel. But I am also a bit nervous… I would greatly appreciate any insight anyone has. Thank you!

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Hi there! I’m a living liver donor and I would be happy to answer questions that you may have.

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@jgiovann, I want to drop you a note to let you know that I am thinking about you and your mom. I hope that everything has gone as planned and that you and your mom were able to have the surgery on Dec, 7.
How about you, how are you doing with recovery? And your mom, Is she able to be off dialysis yet?

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Thank you so much for checking in. Unfortunately surgery did not go as planed. A week prior to the surgery it was cancelled. My mom's antibodies changed, most likely due to a blood transfusion that she had in October when her anemia peaked, and they didn't catch it until the bloodwork at our pre-anesthesia testing. She was no longer a match with her donor and the chain was cancelled. We were crushed. We were taken off the NKR, marked "inactive". Now we're waiting for the antibodies to stabilize. Once they see that they have remained unchanged for a few months they will re-list us.

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@jgiovann, Wow, I know how disappointed you and your mom are. I was once inactivated from the transplant list for 2 months, and when I read your reply, I knew exactly what you feel. I am sorry for this delay.
Will your mom need to have dialysis during this interval?

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Yes, she started dialysis on 10/16/19. When she was in the hospital having her catheter put in they decided to give her the blood transfusion. Dialysis was rough at first, she actually still produces urine and has about 6% kidney function, so at first she was getting very dehydrated and dizzy, but they've adjusted to her needs and she's adjusting. We're actually about to graduate a class to do in home hemodialysis. We're going to do it at home for the first time on Thursday!

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@jgiovann

Thank you so much for checking in. Unfortunately surgery did not go as planed. A week prior to the surgery it was cancelled. My mom's antibodies changed, most likely due to a blood transfusion that she had in October when her anemia peaked, and they didn't catch it until the bloodwork at our pre-anesthesia testing. She was no longer a match with her donor and the chain was cancelled. We were crushed. We were taken off the NKR, marked "inactive". Now we're waiting for the antibodies to stabilize. Once they see that they have remained unchanged for a few months they will re-list us.

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@jgiovann I am so sorry to hear about this delay. I can only imagine how crushed you and your mother must both have been. Hopefully things will stabilize soon and she will again be active on the list. I suspect that once that happens she will be at the top of the list since she must have been there already.
We will be waiting to hear that things have proceeded and that she has finally had her transplant.
JK

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@contentandwell

@jgiovann I am so sorry to hear about this delay. I can only imagine how crushed you and your mother must both have been. Hopefully things will stabilize soon and she will again be active on the list. I suspect that once that happens she will be at the top of the list since she must have been there already.
We will be waiting to hear that things have proceeded and that she has finally had her transplant.
JK

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Thank you very much. They told us that her most recent plans show her antibody level is unchanged from her previous labs, so that's a good sign. Hoping to find our this week how long they have to see stable antibodies for before they'll put us back on the paired donor list. Then fingers crossed they'll get us back in to a new chain soon!

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@jgiovann

Thank you very much. They told us that her most recent plans show her antibody level is unchanged from her previous labs, so that's a good sign. Hoping to find our this week how long they have to see stable antibodies for before they'll put us back on the paired donor list. Then fingers crossed they'll get us back in to a new chain soon!

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@jgiovann, Your mom's stable antibody level sure sounds promising! I had a blood transfusion prior to my transplant, but don't know if it affected my antibody level, or how it would have affected my transplant waiting time since I had a deceased donor. In fact, I didn't know that it was a possibility.
I hope that you are both soon eligible to be returned to the paired donor chain. Will you keep us informed?
@jgiovann, I have absolutely no experience with a live donor chain. I want to thank you for sharing your experience as a living donor who is involved in a paired chain. I feel as if I am witnessing a miracle in the making and I am humbled to be cheering and praying from the sidelines. Hugs and hope to you, your mom, and to all of the donors and recipients who will be blessed by this. 🤍

Are you within a resaonable distance from the transplant center? Or does the current testing and dialysis happen at a local center?

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Thank you very much for your loving support, I greatly appreciate it. I will keep you updated. We live in a small suburb just west of Rochester, NY and are fortunate to have Strong Memorial Hospital only 20 minutes away so we don't have to travel far.

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Hello all! I wanted to check in with this thread as it has been just over a year now since I donated. I thought a 1-year perspective may be a good post. I'm also curious if anybody else has done follow-up posts about how their lives have gone & how they are doing after donation.

As for me: A year after donating, I'm pretty much 100% back to normal. About 5 months after donation I resumed my running routine again, and I'm doing a lot more yoga these days, which has been a huge help. I get the occasional little muscular 'pang' from scar tissue during yoga if I move in certain ways, but that's about it.

2019 was a super hard year for me, for reasons unrelated to my donation, so it took a toll. I suppose it was a good stress test for my body. I try to live a healthy life still, but I can't say I did a super job of that in 2019. I can feel a slight change in now when I'm super anxious or stressed – probably just hypertension/blood pressure saying hello — but my 6month and 1 year bloodwork/checkups are both good.

(Speaking of this: Having jumped into the world of wearable fitness monitors and the like, I'm curious about getting one that monitors blood pressure. I guess the Apple Watch doesn't do blood pressure without additional gear, which is disappointing. If anybody here has recommendations please let me know.)

I was able to reconnect with my recipient friend in AZ again almost exactly 1 year after our surgeries, which was fun. He's still got some other non-kidney health stuff going on, but kidney wise he's doing great 🙂 He looks a heck of a lot better than the last time I saw him, for sure. Score one for science!

So all in all, I'm doing OK, and I'm just more conscious of my body and my health choices now.

PS my recipient friend and I got some local press coverage about our donation, complete with embarrassing photos 🙂
Link is here: https://www.azmirror.com/2018/12/12/college-friendship-leads-to-new-kidney-for-clean-elections-director/

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@cleverusername

Hello all! I wanted to check in with this thread as it has been just over a year now since I donated. I thought a 1-year perspective may be a good post. I'm also curious if anybody else has done follow-up posts about how their lives have gone & how they are doing after donation.

As for me: A year after donating, I'm pretty much 100% back to normal. About 5 months after donation I resumed my running routine again, and I'm doing a lot more yoga these days, which has been a huge help. I get the occasional little muscular 'pang' from scar tissue during yoga if I move in certain ways, but that's about it.

2019 was a super hard year for me, for reasons unrelated to my donation, so it took a toll. I suppose it was a good stress test for my body. I try to live a healthy life still, but I can't say I did a super job of that in 2019. I can feel a slight change in now when I'm super anxious or stressed – probably just hypertension/blood pressure saying hello — but my 6month and 1 year bloodwork/checkups are both good.

(Speaking of this: Having jumped into the world of wearable fitness monitors and the like, I'm curious about getting one that monitors blood pressure. I guess the Apple Watch doesn't do blood pressure without additional gear, which is disappointing. If anybody here has recommendations please let me know.)

I was able to reconnect with my recipient friend in AZ again almost exactly 1 year after our surgeries, which was fun. He's still got some other non-kidney health stuff going on, but kidney wise he's doing great 🙂 He looks a heck of a lot better than the last time I saw him, for sure. Score one for science!

So all in all, I'm doing OK, and I'm just more conscious of my body and my health choices now.

PS my recipient friend and I got some local press coverage about our donation, complete with embarrassing photos 🙂
Link is here: https://www.azmirror.com/2018/12/12/college-friendship-leads-to-new-kidney-for-clean-elections-director/

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@cleverusername that’s wonderful that the donation worked out so well. I admire people so much who do this. I’m sorry to hear that 2019 was not a good year otherwise though. Mine wasn’t great either. It must have been so nice too to have contact again with the recipient.

No fitness trackers do blood pressure, at this point it’s just not doable apparently. I have an Apple 4 and I really love some of its functions but I had a Misfit (not to be confused with Fitbit) and I actually think it was a better activity tracker. I haven’t checked them out recently so I don’t know what the newer, more expensive models have now.
JK

Liked by cleverusername

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@cleverusername

Hello all! I wanted to check in with this thread as it has been just over a year now since I donated. I thought a 1-year perspective may be a good post. I'm also curious if anybody else has done follow-up posts about how their lives have gone & how they are doing after donation.

As for me: A year after donating, I'm pretty much 100% back to normal. About 5 months after donation I resumed my running routine again, and I'm doing a lot more yoga these days, which has been a huge help. I get the occasional little muscular 'pang' from scar tissue during yoga if I move in certain ways, but that's about it.

2019 was a super hard year for me, for reasons unrelated to my donation, so it took a toll. I suppose it was a good stress test for my body. I try to live a healthy life still, but I can't say I did a super job of that in 2019. I can feel a slight change in now when I'm super anxious or stressed – probably just hypertension/blood pressure saying hello — but my 6month and 1 year bloodwork/checkups are both good.

(Speaking of this: Having jumped into the world of wearable fitness monitors and the like, I'm curious about getting one that monitors blood pressure. I guess the Apple Watch doesn't do blood pressure without additional gear, which is disappointing. If anybody here has recommendations please let me know.)

I was able to reconnect with my recipient friend in AZ again almost exactly 1 year after our surgeries, which was fun. He's still got some other non-kidney health stuff going on, but kidney wise he's doing great 🙂 He looks a heck of a lot better than the last time I saw him, for sure. Score one for science!

So all in all, I'm doing OK, and I'm just more conscious of my body and my health choices now.

PS my recipient friend and I got some local press coverage about our donation, complete with embarrassing photos 🙂
Link is here: https://www.azmirror.com/2018/12/12/college-friendship-leads-to-new-kidney-for-clean-elections-director/

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@cleverusername, Thank you for checking in and sharing your update on Connect where others can see it. I enjoyed reading the article that you have included. And the photos are terrific! Patient stories have an essential role in medical care. They connect us with others and they provide information, support, and encouragement as we encounter similar health issues.

I'm glad to hear that your are back on track and have become more aware of healthy choices for your own sake. As a recipient, I find that my healthy choices are having some influence on my family and friends, and I think of that as another benefit from my own transplant.
Enjoy 2020, and I hope that you will be checking in with support and ideas for other prospective donors.

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@cleverusername

Hello all! I wanted to check in with this thread as it has been just over a year now since I donated. I thought a 1-year perspective may be a good post. I'm also curious if anybody else has done follow-up posts about how their lives have gone & how they are doing after donation.

As for me: A year after donating, I'm pretty much 100% back to normal. About 5 months after donation I resumed my running routine again, and I'm doing a lot more yoga these days, which has been a huge help. I get the occasional little muscular 'pang' from scar tissue during yoga if I move in certain ways, but that's about it.

2019 was a super hard year for me, for reasons unrelated to my donation, so it took a toll. I suppose it was a good stress test for my body. I try to live a healthy life still, but I can't say I did a super job of that in 2019. I can feel a slight change in now when I'm super anxious or stressed – probably just hypertension/blood pressure saying hello — but my 6month and 1 year bloodwork/checkups are both good.

(Speaking of this: Having jumped into the world of wearable fitness monitors and the like, I'm curious about getting one that monitors blood pressure. I guess the Apple Watch doesn't do blood pressure without additional gear, which is disappointing. If anybody here has recommendations please let me know.)

I was able to reconnect with my recipient friend in AZ again almost exactly 1 year after our surgeries, which was fun. He's still got some other non-kidney health stuff going on, but kidney wise he's doing great 🙂 He looks a heck of a lot better than the last time I saw him, for sure. Score one for science!

So all in all, I'm doing OK, and I'm just more conscious of my body and my health choices now.

PS my recipient friend and I got some local press coverage about our donation, complete with embarrassing photos 🙂
Link is here: https://www.azmirror.com/2018/12/12/college-friendship-leads-to-new-kidney-for-clean-elections-director/

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@cleverusername, I read the article with great interest. What a story! And thanks for coming back to share your 1 year post donation update. You ask if other members have come back to share. @mauraacro continues to post to the community as well. How long has it been since your donation Maura?

I’m also tagging @keggebraaten on this post. She’ll be interested in reading the AZ Mirror article.

So, share with us some of the healthier choices you’re making now.

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@cleverusername

Hello all! I wanted to check in with this thread as it has been just over a year now since I donated. I thought a 1-year perspective may be a good post. I'm also curious if anybody else has done follow-up posts about how their lives have gone & how they are doing after donation.

As for me: A year after donating, I'm pretty much 100% back to normal. About 5 months after donation I resumed my running routine again, and I'm doing a lot more yoga these days, which has been a huge help. I get the occasional little muscular 'pang' from scar tissue during yoga if I move in certain ways, but that's about it.

2019 was a super hard year for me, for reasons unrelated to my donation, so it took a toll. I suppose it was a good stress test for my body. I try to live a healthy life still, but I can't say I did a super job of that in 2019. I can feel a slight change in now when I'm super anxious or stressed – probably just hypertension/blood pressure saying hello — but my 6month and 1 year bloodwork/checkups are both good.

(Speaking of this: Having jumped into the world of wearable fitness monitors and the like, I'm curious about getting one that monitors blood pressure. I guess the Apple Watch doesn't do blood pressure without additional gear, which is disappointing. If anybody here has recommendations please let me know.)

I was able to reconnect with my recipient friend in AZ again almost exactly 1 year after our surgeries, which was fun. He's still got some other non-kidney health stuff going on, but kidney wise he's doing great 🙂 He looks a heck of a lot better than the last time I saw him, for sure. Score one for science!

So all in all, I'm doing OK, and I'm just more conscious of my body and my health choices now.

PS my recipient friend and I got some local press coverage about our donation, complete with embarrassing photos 🙂
Link is here: https://www.azmirror.com/2018/12/12/college-friendship-leads-to-new-kidney-for-clean-elections-director/

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I can't believe it's been a year!
I'm sorry that 2019 wasn't great for you, it seems like life should throw all of the good things at you. Maybe it was just clearing a path for this year?
I have had a slight problem with my blood pressure also. Slight because mine is normally low and it's higher but still within the normal range. A nurse suggested using a free machine at 1 of the stores with a pharmacy (use same machine each time) and taking 2-3 readings with a minute in between but I've only done it twice. I sent off my 2 year and last ever, blood work and sample to Mayo in December and everything came back good so I just work on being mindful of what I'm doing- or not doing.
I forgot about that scar feeling. Not a pain but sort of pulling? It goes away but it didn't happen often so I'm not sure when it stopped, maybe after about 18 months. I gross myself out thinking about all of the layers of muscle, fat and skin they stitched backup and then stop thinking about it.
I'm glad your friend is doing better and hope his other medical issues get resolved soon. My recipient had quite a few problems with viral infections in her first year and didn't ever think she'd feel better but 2 years later she's back to work, traveling for fun and babysitting her first grand daughter. I think back to the first time I met her, the day before surgery and can't believe the difference in her. It is truly an amazing thing.

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Today's member spotlight features @mauraacro. Read her interview with fellow member @rosemarya to learn more about Maurawhat inspired her to donate a kidney to a stranger and share her experience her on Mayo Clinic Connect.

– From the Kidney Donor's Perspective: Meet @mauraacro https://connect.mayoclinic.org/page/about-connect/newsfeed-post/from-the-kidney-donors-perspective-meet-mauraacro/

+Follow the About Connect page to see all the Member Spotlights and be notified when new spotlights are published: https://connect.mayoclinic.org/page/about-connect/tab/newsfeed/

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