From a Living Donor: One year later, what is your life like now?

Posted by cleverusername @cleverusername, Jan 15 5:04pm

Hello,

I recently posted a one year post-donation update* in the “Kidney transplant – The Journey from the Donor’s Side” thread and was encouraged to make this a standalone discussion. So here I am. 🙂

Mostly I was curious to see if anyone else who had donated had posted about what their lives (and bodies) are like after that donation. I.E. are there are any knock-on effects they may have noticed, or other things they’re experiencing because of their donation.

Me: I’m a kidney donor, I donated in Nov 2018, I just turned 44.
Health wise: I run, I do yoga, I talk lots of walks. I’m active.
I have a high-stress job, though, and other external (non-donation related) forces that really increased my stress and anxiety levels in 2019.

One year after my donation I basically feel I am back to normal, save for two things:

1) I get an occasional little muscular ‘pang’ from my scar tissues during yoga if I move in certain ways. So I can feel that there’s still some lingering after-effects and scarring, but these are extremely minimal these days. They were worse in early 2019 but gradually faded out.

2) My 6-month and 1-year bloodwork are both good, but I can sometimes feel that my ‘system has changed’ – for lack of a better word for it. For example I’m pretty sure my blood pressure has been affected – I can feel a slight change in now when I’m super anxious and/or stressed out. I can get lightheaded, I can feel my ears ring, I can just feel that something’s ‘off’ – etc. So I’m pretty sure that’s basically some hypertension/blood pressure saying hello.

Also: I’m acknowledge that I didn’t live as healthily as I possibly could have in 2019, which probably contributed to this. There were certainly some adverse health choices I made that I know weren’t the greatest in the world. But I’m way more conscious of this kind of thing now.

Because of that, and because of point #2 I’ve been very into doing a couple of things differently in 2019 and 2020:

a) I’m adjusting my diet. I’ve also just read a really interesting book** on food and diet that also prompted me to re-evaluate my eating habits in general, so the combination has me more conscious of my diet and how that affects the rest of my body.

b) I’m doing a lot of regular yoga. It helps my overall body ‘feeling’ in general, and it’s a stress reducer.

c) I’m being more conscious of my overall stress levels at all times

All in all I’m pretty surprised at how little of a difference I feel. I’ve been able to reconnect in person with my recipient*** since our donation – and I have zero regrets about my decision to donate. All of these things in this post are honestly very minor when I put it all in perspective. But I think it’s good to post about them anyway.

And that’s me. I’m looking forward to any other people who may want to chime in.

* Thread: “Kidney transplant – The Journey from the Donor’s Side”
https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/?pg=22#chv4-comment-stream-header

** Book: “How Not To Diet”
https://us.macmillan.com/books/9781250199225

*** Article: “College friendship leads to new kidney for Clean Elections director”
https://www.azmirror.com/2018/12/12/college-friendship-leads-to-new-kidney-for-clean-elections-director/

@cleverusername, I am delighted to see your donor-to-donor discussion! I cannot think of a better way for donors and potential donors to learn and share firsthand experiences about life after the donation. Did you know that in the recent UNOS annual report, there were nearly 7400 living donor transplants in 2019? A record number!
I have no experience to share since I did not have a living donor. To get started, I want to tag some members who have experience with living organ donation. @threerrr3, @cmael, @taarthi, @jolinda, @rebekahinvt, @cehunt57, @triciaodonnell, @charicen, @ghayden777, @sameeh123, @jgiovann.

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@rosemarya

@cleverusername, I am delighted to see your donor-to-donor discussion! I cannot think of a better way for donors and potential donors to learn and share firsthand experiences about life after the donation. Did you know that in the recent UNOS annual report, there were nearly 7400 living donor transplants in 2019? A record number!
I have no experience to share since I did not have a living donor. To get started, I want to tag some members who have experience with living organ donation. @threerrr3, @cmael, @taarthi, @jolinda, @rebekahinvt, @cehunt57, @triciaodonnell, @charicen, @ghayden777, @sameeh123, @jgiovann.

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@cleverusername & @rosemarya thank you for tagging me in this discussion about living organ donation. I WISH I had experience with this but I don’t, at least not yet. I am diabetic and have chronic kidney disease (CKD). I had a pancreas transplant (from a deceased donor) in 2005. The transplant was like a personal miracle for me in that some of the complications of diabetes were reversed &/or became stable. However in 2016 it became apparent that my kidney function was worsening and I would need a kidney transplant. I’ve been approved, accepted & listed for kidney transplant at Mayo in Rochester. I am also looking for a living kidney donor. I am very interested in paired donation. Thus far I have not found a willing/suitable donor for myself or to participate with me in a chain. I’m starting my 5th year of looking & waiting. My GFR has bounced between 14 – 42 during this time and is currently 23 so my listing was changed to inactive (20 is typically the cutoff for active listing for transplant). I guess I should be grateful for that because I’m still not on dialysis. I have been hoping for a preemptive transplant to avoid dialysis. But it is hard to maintain hope when there is no donor in sight!

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@cehunt57

@cleverusername & @rosemarya thank you for tagging me in this discussion about living organ donation. I WISH I had experience with this but I don’t, at least not yet. I am diabetic and have chronic kidney disease (CKD). I had a pancreas transplant (from a deceased donor) in 2005. The transplant was like a personal miracle for me in that some of the complications of diabetes were reversed &/or became stable. However in 2016 it became apparent that my kidney function was worsening and I would need a kidney transplant. I’ve been approved, accepted & listed for kidney transplant at Mayo in Rochester. I am also looking for a living kidney donor. I am very interested in paired donation. Thus far I have not found a willing/suitable donor for myself or to participate with me in a chain. I’m starting my 5th year of looking & waiting. My GFR has bounced between 14 – 42 during this time and is currently 23 so my listing was changed to inactive (20 is typically the cutoff for active listing for transplant). I guess I should be grateful for that because I’m still not on dialysis. I have been hoping for a preemptive transplant to avoid dialysis. But it is hard to maintain hope when there is no donor in sight!

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@cehunt57, I hope that you will hear some good news in the near future from a potential living donor or from the transplant dept about a kidney for you. I think that no one knows what the waiting is like, unless they have experienced it themself or in a loved one. I also like to believe that as more and more people learn about the healthy post-transplant-donor-life of people like @cleverusername, that they will become more interested in considering themselves as a living donor. Cehunt, thank you for your reply and thank you for sharing your patient experience.
I am happy to hear from you. I hope along with you, and I continue to hold you in my prayer and my thoughts.

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Hi @cleverusername, if you agree with the change, I modified the title of this discussion to "From a Living Donor: One year later, what is your life like now?" I think it captures the essence of your message and will invite other donors to share what life is like post-donation. Do you like the modified title?

I know @mauraacro offered her thoughts elsewhere and I hope she'll share more here too. I'd also like to get an post-donation update from @rebekahinvt and @onecentwalsh. How are you doing?

@ek101085 and @jdcowle5 where are you both in the donation process?

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@colleenyoung

Hi @cleverusername, if you agree with the change, I modified the title of this discussion to "From a Living Donor: One year later, what is your life like now?" I think it captures the essence of your message and will invite other donors to share what life is like post-donation. Do you like the modified title?

I know @mauraacro offered her thoughts elsewhere and I hope she'll share more here too. I'd also like to get an post-donation update from @rebekahinvt and @onecentwalsh. How are you doing?

@ek101085 and @jdcowle5 where are you both in the donation process?

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Hi! I’ll be 6-months post liver donation next week. Things are going well!

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@rebekahinvt

Hi! I’ll be 6-months post liver donation next week. Things are going well!

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@rebekahinvt that’s what we love to hear, congratulations are in order. I hope the recipient is doing well too. I’m sure the recipient is extremely grateful to you. That is truly a gift of love.
JK

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@contentandwell

@rebekahinvt that’s what we love to hear, congratulations are in order. I hope the recipient is doing well too. I’m sure the recipient is extremely grateful to you. That is truly a gift of love.
JK

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Thank you! I’m not sure how my recipient is doing. I met her briefly about a week after surgery, and heard that she ended up staying in the hospital quite a bit longer. I hope, too, that she is doing well now. The surgeon sounded hopeful the last time we exchanged messages.

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@rosemarya

@cleverusername, I am delighted to see your donor-to-donor discussion! I cannot think of a better way for donors and potential donors to learn and share firsthand experiences about life after the donation. Did you know that in the recent UNOS annual report, there were nearly 7400 living donor transplants in 2019? A record number!
I have no experience to share since I did not have a living donor. To get started, I want to tag some members who have experience with living organ donation. @threerrr3, @cmael, @taarthi, @jolinda, @rebekahinvt, @cehunt57, @triciaodonnell, @charicen, @ghayden777, @sameeh123, @jgiovann.

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You are most welcome to ask whatever you want.
Today 9 months have passed since the donation.
Creatinine has dropped down to a good figure.
Doing sport with full capacity which was so difficult in the first 4
months.
Even fasting is OK now.
Hydration is very important.
I hope you are doing well.
Best wishes

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I so appreciate your perspective and sharing your experience. I am currently on the kidney transplant waiting list. No living donor as of yet, but fingers crossed that something happens soon. As a patient, I would be eternally grateful for the gift of life. I am also post 2 liver transplants and a retired RN. That gives me a unique perspective, as well. Thank you for sharing.

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Hi all, I am almost 2 years post donation. My kidney went to my husband of 46 years. We are actually both doing very well. I can do all the activities that i used to do and I try and eat quite healthy. My husband has not had as much activity, and I worry a little bit about him gaining weight. I have gained about 15 pounds as well. But, we live in Minnesota and winters can be hard on you! I am an Ambassador for LifeSource and enjoy talking to high school groups about “checking the box” to be a donor on their driver’s license when they apply. I wish you all well!

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@triciaodonnell

Hi all, I am almost 2 years post donation. My kidney went to my husband of 46 years. We are actually both doing very well. I can do all the activities that i used to do and I try and eat quite healthy. My husband has not had as much activity, and I worry a little bit about him gaining weight. I have gained about 15 pounds as well. But, we live in Minnesota and winters can be hard on you! I am an Ambassador for LifeSource and enjoy talking to high school groups about “checking the box” to be a donor on their driver’s license when they apply. I wish you all well!

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@triciaodonnell, it is hard to keep moving when the snow won't stop coming. @contentandwell has been sharing some great, simple indoor exercise videos along with others in the virtual walking group discussion. Check them out here:
– Let’s Go Walking! Join me for a virtual walking support group https://connect.mayoclinic.org/discussion/lets-go-walking-join-me-for-a-virtual-walking-support-group/

JK, I really like the last 2 videos. The 15 minute indoor walking one and the 5 minute balance video.

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My first donor and I are married. She gave me her kidney in 1987 – it lasted 11 years! At that time, her surgeon said it was the smallest nephrectomy he had ever performed (4” scar on her side). My second donor is our son, he was out of hospital in 4 days and on the basketball court in 2 weeks, that was 20 years ago. I asked my wife what she would say – 32 years later – about her body and the donation, “Well, it’s never made any difference to my functioning at all. I don’t ever think about it, even.”
Thank you for being so brave and giving the gift of life – I mean that gift in the sense that you handed your donor their life back (if they choose to live it fully). I have gotten an advanced degree, worked in my field, worked for the VA, kayaked, raised my children and now enjoy grandchildren. I have never held back on life – last year we went rappelling in Moab, UT, traveled and enjoyed the Grand Circle and discovered Zuni and Hopi ruins. This life is an amazing one!

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@lizzy102

My first donor and I are married. She gave me her kidney in 1987 – it lasted 11 years! At that time, her surgeon said it was the smallest nephrectomy he had ever performed (4” scar on her side). My second donor is our son, he was out of hospital in 4 days and on the basketball court in 2 weeks, that was 20 years ago. I asked my wife what she would say – 32 years later – about her body and the donation, “Well, it’s never made any difference to my functioning at all. I don’t ever think about it, even.”
Thank you for being so brave and giving the gift of life – I mean that gift in the sense that you handed your donor their life back (if they choose to live it fully). I have gotten an advanced degree, worked in my field, worked for the VA, kayaked, raised my children and now enjoy grandchildren. I have never held back on life – last year we went rappelling in Moab, UT, traveled and enjoyed the Grand Circle and discovered Zuni and Hopi ruins. This life is an amazing one!

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@lizzy102
This is the happiest story I've heard all day!
Thanks for sharing.
What an amazing family you have!

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This is a double post from another page. It was suggested that I post here also.

Are living organ donors considered high risk for viruses & flu? I don't think we're high risk for contacting it but would it affect treatment making it more dangerous for us?
I am healthy and taking the recommended precautions but with things starting to open up, I expect to be back to work soon (Yay!) with more people out & about.
A transplant nurse at Mayo didn't offer much info besides to practice social distancing and stay away from anti inflammatory meds. I'm not sure if that's all the information available or if it's because I'm not sick and have passed my 2 year mark so am not covered by Mayo anymore.
I hope everyone is well.

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@mauraacro

This is a double post from another page. It was suggested that I post here also.

Are living organ donors considered high risk for viruses & flu? I don't think we're high risk for contacting it but would it affect treatment making it more dangerous for us?
I am healthy and taking the recommended precautions but with things starting to open up, I expect to be back to work soon (Yay!) with more people out & about.
A transplant nurse at Mayo didn't offer much info besides to practice social distancing and stay away from anti inflammatory meds. I'm not sure if that's all the information available or if it's because I'm not sick and have passed my 2 year mark so am not covered by Mayo anymore.
I hope everyone is well.

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@mauraacro, Here is some information that I have found as i prepare to travel to Mayo for my annual appointment. It does not contain information specific to returning to work, however it does It does contain some excellent guidance for all of us as our communities begin to reopen.

COVID-19 safety: Tips for travel, restaurants, and the gym
https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-safety-tips/art-20485967
Stay well!

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