Paul Rakoski and Kelly Demello
Paul’s alarm goes off at 2:50 A.M. His first notion is to go right back to sleep, but this is soon replaced by determination. He pulls himself upright and shuffles from bed. Fifteen minutes later, he’s backing out of his driveway and driving south. In the faint glow of the dashboard lights Paul laughs to himself. He’s really done it now—jumped through all the hoops—and is just two hours away from totally surprising the heck out of Kelly.
Kelly lives a literal stonesthrow away from the Cape Cod Canal. She fastidiously ties her running shoes and heads out the door a little after 5 A.M. There against the banks of the canal lays the paved path, the seven miles she was about to run as part of The Falmouth Road Race.
The fundraising event, which normally attracts thousands each August, was being held virtually this year due to the COVID-19 pandemic. Kelly and other participants had a whole week in which they could run to support various nonprofits in Massachusetts. She raised close to $3,000 for New England Donor Services which aids in the organ and tissue donation process and ran the race a total of four times this August as donations continued to come in. “It really hit me this year,” she says, “all the people that had lost someone or donated their organs. I wanted to show the living side of organ donation. I get to be alive and see Paul live.” Her donation of one of her kidneys to her longtime friend, Paul, is a defining aspect of her life, and a potent force that led her to the predawn darkness on the canal this morning.
She takes out her phone to snap a picture—proof of her run—when a voice rises behind her.
“You ready to do this?”
Kelly instantly recognizes the voice.
“Are you friggin’ kidding me Pauly!?”
She turns around and sees Paul, grinning like a madman dressed in running gear. She cannot believe it and instantly tears start to fall.
“But how…” Kelly tries to speak.
“Come on, let’s do this,” urges Paul, trying to hide a smile.
Kelly remains flabbergasted, but she knows it’s time to start jogging. She catches her breath and pulls herself together. She nods and then, the two take off in stride laughing and talking the whole seven miles along the canal, Kelly’s two kidneys temporarily reunited between their two bodies jogging next to each other.
“When she got to $1,500 I knew I had to do something,” says Paul, a month later, sitting on a bench just feet from where the surprise meeting took place. He had tracked Kelly’s fundraising for the race and was impressed. He decided to take action in the most sincere way he knew: a prank. He would show up unannounced, from his home over two hours away in New Hampshire to run with her. It seemed simple, perfect.
“She told me her goal was to finish the race at sunrise and I was like, ‘crap!’” It would be no small feat to get there on time. Paul coordinated with Kelly’s husband, Chris, in confidence to try and figure out when exactly she would arrive at the canal—something that seemed to change every couple days. Then, came the task of running seven miles. “I actually hate running,” says Paul. “I hadn’t run in four years. I thought, ‘oh this is going to be horrible.’”
However, under his brusque commentary lies a profound adoration for his friend and kidney donor who undoubtedly changed Paul’s life for the better. “I always struggle with saying thank you. How do I say thank you enough?” says Paul. “There’s nothing I can do, in my mind, to show the gratitude that I have for what Kelly did aside from taking care of myself and taking my medicine.” For Paul, the difficulty of pulling off the stunt only added to his sense of endearment, his ever-present longing to do good on his friend’s selfless act that gave him hope for a healthier life.
Paul was born with Fabry disease, a rare lysosomal storage disorder where lipids build up in the body and affect critical organs such as the heart, brain, and kidneys. “My body is missing an enzyme that breaks down fats,” he explains. Paul did not get his diagnosis until adulthood, although there were many signs of trouble early on. “I never sweat,” says Paul. He grew up playing team sports like basketball and hockey. Post-game in the locker room, Paul noticed everyone else’s clothing was drenched with perspiration, but he was always dry. “My mother didn’t sweat either,” says Paul. “We also had a constant ringing in our ears. We thought all this was normal.”
Never one to let discomfort hinder his aspirations, Paul spent his adolescence and early adulthood dealing with pain in the background. He developed neuropathy in his hands and feet—a common symptom of Fabry that was exacerbated by heat. But like many a stubborn mind, it wasn’t until his 30s when Mary, his wife, raised concerns, that he seriously sought out a diagnosis. “I was complaining of back pain,” says Paul. “She told me, ‘You’re too young to live in the pain for the rest of your life.’” Over the next three years Paul would search for the cause of his ailments. A nephrologist diagnosed him with polycystic kidney disease (PKD) in 2006, but his case was not typical. In early 2007, Paul finally got a kidney biopsy which resulted in his Fabry diagnosis. “I was ecstatic,” says Paul. “I finally had an answer after years and years of not knowing.”
The diagnosis would not be limited to just Paul. In the course of further genetic testing, his mother, sister, and two of her children all tested positive for Fabry. Paul now knows that his mother most likely had a de novo mutation which initiated the inheritance pattern of the x-linked dominant disorder. While there is no cure for Fabry, the development of new medications including enzyme replacement therapy (ERT) and an oral chaperone therapy has helped Paul and his family mitigate some of the effects of the disease.
However, Paul’s kidneys had already sustained lasting damage. “I didn’t realize how sick I was,” he reflects. “My friends thought I was dying. I was down to 130 pounds.” In the fall of 2007 he visited a specialist at Massachusetts General Hospital (MGH) and got the news that he would need a new kidney. “She told me, ‘You’re not going to go on dialysis. You need to find a living donor.’” With these words, Paul entered new territory in his journey, and Kelly found an opportunity to give a once-in-a-lifetime gift to her friend.
Kelly first met Paul at Massachusetts Maritime Academy during her freshman year in 1995. “He was very quiet,” she remembers. Paul was a natural introvert, but the two found connection through a group of tight-knit friends who would meet up for dinner together whenever possible. “We called ourselves the supper club.” The Supper Club continued to meet long after everyone had graduated. They remained in touch through many life transitions, weddings, and funerals. “I feel like I could call any of them at any time, and at the drop of a hat, they’d be here,” adds Paul.
The Supper Club met up for dinner in Rhode Island in 2008 when Paul casually mentioned that he was going to need a kidney transplant. The notion stuck with Chris and Kelly. “Literally the next day before work, Chris says to me, ‘I think we should get tested to help Paul,’” she recalls. Still grieving the recent loss of her mother to melanoma, Kelly recognized a way to dramatically change the course of a friend’s disease for the better. “I can’t cure cancer, I’m not a doctor. So when Paul’s need presented itself, I was like, that’s totally something I can do. I’m a healthy human and can do that. It was the drive to fix at least one part of the corner of the world I live in.”
Off the bat, Kelly was the better match, and over the next year, she worked her way through the necessary testing to make sure she would be a good donor. One day in January 2009, with no grand announcement, Kelly and Paul got word that the transplant was slated for the second week of February. They were both ecstatic. However, a few days before the donation Kelly started feeling unwell. “I got the flu and they told me not to come in. I was devastated.” She turned to Paul to try and recompense. “I told her, ‘It’s okay. We can just do the surgery next week when you feel better,’” recalls Paul. “’I’ve made it this far. I’ll make it till then.’”
And he did. On February 24th 2009, Paul and Kelly went into MGH for transplant surgery. Hours later, Kelly awoke, sore but certainly not the worst pain she had been in. “After birthing three children,” she comments, “giving up a kidney was nothing.” Paul awoke next with a healthy, intact kidney in his body. “Physically it was easy to get over the surgery,” says Paul, “but what surprised me was that it was tough mentally—the realization that there’s someone else’s organ in my body!”
The two recovered quickly in the hospital and went home by the end of the week. Fortunately, the transplant took exceptionally well. Paul regained his strength and over the coming years was able to win back some of the physical prowess of his youth, competing in six annual Transplant Games and coming home with numerous medals. “I get to see him live an awesome life,” reflects Kelly. “Most people who have donated organs don’t get to see the living part of it, but I do. I can see my friend gain his life back. He’s crushing life right now.”
Despite the success of the transplant, both friends know that there is a limited time-frame that donated kidneys tend to last. Paul will likely need to find another donor in the coming years. As an advocate for organ donation, he has an acute understanding of the potential for endless waitlists due to a national organ shortage crisis. For this reason, he remains open to new technologies that are aiming to tackle the need. “I think it’s great if you can either grow organs through 3D printing or harvest from another live animal—that is phenomenal because there are over 100,000 in the US waiting for organs, and the numbers are only going to go up until there are alternatives out there.”
For now, Paul’s goal is to see if Kelly’s kidney will make it 20 years, his steadfast commitment to his own health bolstered by the possibility of keeping part of Kelly alive longer as well. “Because my kidney is awesome,” Kelly makes sure to chime in. Paul laughs and nods in approval.
As Paul and Kelly finished their run along the canal that morning, Paul reserved one final surprise. Reflecting the sunshine just poking above the horizon, Paul removes the first medal he won at the 2017 World Transplant Games, a silver medal in kayak racing. Kelly turns to mush.
“This is for you,” he says.
Kelly holds the medal in her hands and starts to cry. Paul sheepishly looks down.
“Thank you,” she forces out, wiping a tear and making eye contact with him. These are the words, sometimes unspoken, that she and Paul will never get tired of saying to one another. While Paul may never completely fulfill his need to say it, Kelly will always return the favor.