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

Posted by cleverusername @cleverusername, Jan 15, 2020

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/

@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!

Jump to this post

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

REPLY

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.

REPLY
@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.

Jump to this post

@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!

REPLY

Now it is one year two months since donation.
All aspects of life returned to normal.
Renal function is OK.
I do tests every other month for check up and it is normal for creatinine to increase for donors.
My baseline was 1.1 before donation and now it is around 1.55
I encourage you to do some cardio exercise twice a week and some resistance training which will help in managing blood pressure.
I am 51 and I do exercise 6 days per week.
The recipient is doing well.
As you said stress is everyone's enemy so I always say: switch off your engines.
As per one of the above notes: No. Donors are not under increased risk of getting infection.
And finally I wish from all my heart for those waiting for a donor that they get them as soon as possible.
Regards to everybody.

REPLY

Hi – I am a living kidney donor. I posted on another thread in this Group, and one of the moderators suggested some on this thread might also be interested in my story. I'm happy to answer questions or talk with any former or prospective living donors!

On Sept 28, 2018, I donated a kidney at the Mayo Clinic in Rochester to a woman I read about in the newspaper (the lovely blonde in the attached photo). Fifteen years before a dear family friend donated a kidney to my beloved cousin Ann so I had some experience with the idea. But learning I was a perfect match for a complete stranger still blew my mind.

Because I lived in Kansas City and my recipient lived in Ft. Lauderdale, we both had to travel quite a distance to Rochester, MN for our appointments, evaluations, and the ultimate surgery. While the care at Mayo is extraordinary, I would still recommend finding a Transplant Center near your home if at all possible. In addition to traveling to Minnesota with my caregiver (my husband) four times during the donation process, I had to ship numerous blood and urine samples via FedEx, including some on dry ice (which is harder to do than you might think!). I am retired, so this extra burden was not a problem, but my husband missed 18 days of work for all the out-of-town travel. If I had donated closer to home that would have been less of an issue.

The evaluation process had a lot of ups and downs. I was a borderline donor: 61 years old, BMI of 30, borderline hypertension, blood glucose of 107. But my health was otherwise excellent, my A1C was good (4.9) and my kidney function was top-notch – creatinine of .8 and eGFR non-African-American over 60. Mayo had me run an additional test – a two-hour glucose tolerance test that provided more optimistic results. I also agreed to begin taking a low dose of Lisinopril to treat my mild hypertension. The medication gave me a terrible, dry cough (a known side effect for about 30% of people who take it), so I was switched to Losartan, which solved that problem and also brought my blood pressure under control in less than two weeks. Based on those results, Mayo approved me to donate four months after I first called their Transplant Center to inquire about volunteering.

Subsequent blood tests showed a new, unexplained incompatibility with my recipient, so we enrolled in the paired kidney exchange program. We quickly matched for a 6-person chain, which was very exciting. That chain fell apart due to an issue with another donor-recipient pair, so Mayo re-evaluated our blood tests and decided it would be safe for me to donate directly to my intended recipient.

Our first surgery date was Sept 18, 2018. After a full day of final tests I was settled into the hotel room with my husband preparing for surgery in the morning when the on-call nephrologist called from the Mayo hospital: my recipient was too sick for surgery; our procedure was cancelled. I was stunned. It did not seem possible that we had done so much to get to this point, and now it was over.

My husband and I drove home to Kansas City very unsure about what might happen next. As it turned out, Mayo’s excellent, aggressive treatment worked, and within a week my recipient was healthy enough for the transplant to continue. We drove back to Rochester where my recipient was waiting, and on Sept 28, 2018 our transplant surgeries were successful!

I recovered very quickly, with little post-op pain and no complications. I was released after two nights in the hospital, and I went back to the hotel to recover before driving home five days later. My recipient was able to fly home to Ft. Lauderdale three weeks after surgery.

I rested and recovered at home, regaining strength very quickly. Within a month I was able to accompany my husband on a business trip to NYC, where I attended several Broadway shows and walked the city streets for miles. At my 6-month follow-up at Mayo my kidney function was so strong “we’d let you donate again except you only have one kidney.” My recent two-year labs show creatinine of 1.13, which is excellent for a solo kidney. I continue to take Losartan and my blood pressure remains under control. I’ve lost 5 pounds and work (actually, struggle) to lose more. Thanks to the kidney donation process I am healthier than I have ever been, focusing on exercising, eating well, and drinking lots of water.

My recipient is doing well, too. Before COVID she traveled to Kansas City frequently to see family, and we often got together when she visited. Now we stay connected by text, phone, and Facebook. She has traveled a great deal since the transplant and had many grand adventures. She’s even gone zip lining! I often tease her that the kidney she received is having a lot more fun than the kidney I kept!

I joined with medical ethicist John D. Lantos, M.D. to write about my experiences as a living organ donor and the broader historical, scientific, and ethical issues involved in organ donation. Our book, Kidney to Share, is being published by Cornell University Press and will be released in May 2021.

Donating a kidney was complicated, difficult, and frustrating. It was also the most meaningful experience of my life. I wish everyone could have that feeling of participating in a real-life miracle.

REPLY
Please sign in or register to post a reply.