In January, Justine Komin of Wichita, Kansas, turned 29 — remarkable for someone with cystic fibrosis. She owes her life to a double-lung transplant from Mason Mudlin, who died of Addison disease at 27.
Driving a race car was on Mason’s "bucket list,” so last September, with his lungs and family present, Komin did laps for Mason, raising funds for research. Meeting his family in person was so rewarding that Komin recently founded the nonprofit Meet my Heart.
Typically, organ transplant organizations facilitate correspondence between families who are agreeable. But Komin wants to help defray costs and make those face-to-face meetings special. She shares the story of her inspiration:
My donor’s family reached out to his recipients the night Mason donated his organs. He saved four people’s lives and gave another the gift of sight. His sister, Melanie, told of Mason’s kind heart, his mission to help others and a wish to become an organ donor in the event of his passing.
That letter arrived two months to the day after my double-lung transplant. Two-and-a-half years later, we connected through Facebook and I have been communicating with Mason’s sister and mother, Sheila, and brother, Mac, ever since.
They were so surprised and happy to hear from me. I was not expecting such a warm thank you.
Mason’s memorial page is full of pictures and memories. One was a list Melanie had written on the night Mason became a donor: “Liver 60 M, Lung young F, K 2 M 50’s, Panc Research, Corneas (2).”
A second was a paper written in Mason’s own handwriting: “Go skydiving, drive a race car.” It was his bucket list.
Mason had Addison disease, which affected his adrenal glands, as well as diabetes. He was no stranger to hospitals and doctors. We were a lot alike in that sense, growing up chronically ill with a desire to experience every bit of what life had to offer.
I was diagnosed with cystic fibrosis at 6 weeks old. I had two uncles who passed away from CF in childhood and another aunt who who got lucky with her mutation combination. She’s 59 this year and is a full-time employee. I don’t have that option.
I was listed for a double-lung transplant in 2008. I was a lot sicker then, than when I got transplanted in 2010. I was in school and I moved back home with my folks so they could take care of me.
I had a rough go of it the first year and had several brushes with death. My airways were really floppy and my lungs kept collapsing. It took time to heal and I had lots of procedures.
I have been lucky. In 1986, the year I was born, 29 percent of CF patients were over the age of 18, but today that number is almost 50 percent because of lung transplants.
[Nearly 2,800 people with CF have received lung transplants since 1991, according to the CF Patient Registry. More than 80 percent are alive one year after transplantation, and over 50 percent are living after five years.]
Last year, through a family connection, Whitehead Racing wanted to put me in a car to turn Mason’s dream into a reality. I was nervous, but also touched. They wanted to bring Mason’s whole family from South Dakota to meet me. I drove at intermission on the final race night.
Meeting in person gave us both a chance to heal. A lot of recipients feel guilt after transplant — that they benefited from someone’s death. It’s hard to imagine what a donor family feels, apart from profound grief.
When a loved one passes away, we often feel that a piece of our heart has gone with them. There is no destination to assign that piece, no address, no phone number. When someone is able to donate organs in death, it's almost as if that person continues to live on.
When the Mudlins went home, I stumbled upon a little online contest. The site featured a logo builder to create a real or imaginary company. I began tinkering and soon found a double heart logo that looked like two Ms, one partially overlapping the other: Mason Mudlin.
From there I began brainstorming, researching, and learning about non-profit organizations and how I could make this idea — to unite organ recipients with their donors’ families — a reality.
My goal is to work with organ procurement organizations to include something about "Meet My Heart." We are not going to limit it to any organ or disease. It means so much to be able to hug your donor’s family.
Melanie works for "Make a Wish" in South Dakota and she is excited about helping me. Her parents run the concessions and parking at Mount Rushmore. They are so proud of Mason who gave his lungs, eyes, kidney and liver.
As for me, I am doing so well. My lung function has been stable for more than a year. I decided to go back to school. If I was going to be around, I wanted a full-time job and my own health insurance. People take that for granted.
I am getting get my master’s degree in epidemiology at the University of Kansas Medical School. It makes me think I might live a relatively lengthy life. Gosh, I’ll have to plan for retirement!
This essay was written with the help of TODAY contributor Susan James