Charlie needed a kidney, so I gave her one of mine.
There is much more to our kidney journey, but that was my singular mindset in becoming a living kidney donor for my daughter.
In 2015, Charlie was 5-years-old when she was diagnosed with focal segmental glomerulosclerosis (FSGS) and Nephrotic syndrome. The disease creates scarring in the filters of her kidneys, causing her to spill protein. There is no known cause or cure.
We were referred to C.S. Mott Children’s Hospital in Ann Arbor, ranked as one of the best hospitals in the nation for pediatric nephrology. We make the 75-minute drive from our home in Battle Creek, and we were traveling there four days-a-week for dialysis as she withered away and reached end-stage kidney failure in 2019.
I’m happy to share that Charlie had a successful transplant in May of 2019. As of our four-year “kidneyversary” in 2023, she is doing great! Post-transplant, she is more active than ever, playing on the middle school basketball team, taking dance lessons and performing in recitals, and even running a couple 5Ks.
The nature of Charlie’s disease means things could change at any moment, and she continues to have challenges due to being immunocompromised. She certainly has more hurdles ahead, but we are taking it one day at a time and enjoying her return to a more typical childhood.
From the time she was diagnosed until her eventual transplant, Charlie tried several treatments and clinical trials in an effort to reach remission. As her kidney function continued to decline, my wife and I resigned to the fact that our daughter was going to need new a kidney.
Motivated to be healthy enough to be her donor without knowing I would be a match, I began a daily running routine on January 1, 2018. That’s when I resolved to run at least one mile each day for a year. While I was an active kid and a mediocre multi-sport athlete in high school, I essentially took my 20s off from fitness and never ran more than a 5K distance until I was 35.
By the summer of 2018, I ran in my first 5K race and had shed about 25 pounds. I continued the running streak into 2019 and added more distance, eclipsing 1,000 cumulative miles that year.
As I was going through the process to become a donor, we learned that kidneys from living donors can function for up to 20 years, whereas a kidney from a deceased donor typically functions up to eight years. I was surprised to learn that studies have found that kidney donors have a longer average lifespan than the average population, as it was explained to me that donors are typically health-conscious people.
We also had our eyes opened to the desperate need for organ donations and felt blessed that we had a strong support system of family and friends who lined up to offer themselves as potential donors. We realize how special that is and applaud anyone who is willing to donate.
Fortunately, my wife Alexis and I are both blood matches (Charlie and I are B negative and B positive, respectively, while Alexis is universal donor). We determined I would be first in line to go on the table so Alexis could be the one to take care of Charlie and I – along with our then-3-year-old son Oliver – following the transplant.
On transplant eve, I ran a few miles on the treadmill at C.S. Mott Children’s Hospital. I was hoping it would help me sleep better (it didn’t). But it felt like the last day of training before a big race, and I was supremely confident.
As I mentioned, the transplant was a success – the 3,000th living donor transplant at the University of Michigan Transplant Center – and the kidney “pinked up” and started working right away. I woke up in my hospital bed at the neighboring hospital feeling groggy and like I had just lost the world’s longest sit-up contest. I was tired and sore, but not in pain.
I saw Charlie briefly the night of our transplant after a doctor graciously pushed me by wheelchair through the hallways from U-M to C.S. Mott. By the time I got to visit Charlie the next day, she was already walking circles around me, each of us hunched over and trotting down the hospital corridor together like a couple of elderly mall walkers. I stayed in the hospital another night before I was sent home, while Charlie recovered for a few more days in the hospital with her mom by her side before coming home with my old left kidney.
Post surgery, we did a lot of walking to help with the healing process and I was back running at my normal pace within two weeks.
As I reflect on the role running played in my kidney donation, I should note that it also helped me keep my sanity during times of great stress, and has been huge in terms of boosting my mental health. As much as I have benefited from living a healthier lifestyle, my kids remain my primary motivation as I aim to set a positive example for them to follow.
With my one kidney, I have continued to make strides in my fitness and I’m currently in the best shape of my adult life. I’m playing pickup basketball again, and have raced in four half marathons post-transplant, most recently accomplishing my goal of finishing the Kalamazoo Half Marathon in under two hours this spring. I will soon begin training for what has become my annual fall half marathon retreat on Mackinac Island, which hosts the annual Great Turtle Run around the island located between Michigan’s peninsulas.
I am continually inspired by Charlie, Kidney Donor Athletes and all who help amplify the need for more organ donors.
Want to read more about Nicholas and his donation? Check out these links!
DETROIT FREE PRESS: Michigan sports writer: I gave my daughter a kidney. She has given me so much more: https://www.freep.com/story/sports/2019/06/13/battle-creek-kidney-organ-donation-nephrotic-syndrome-university-michigan-medical/1443498001/
HUMANKIND (Facebook video)
C.S. Mott Children’s Hospital (Facebook video)