“A lot of people say they are scared of death – and don’t get me wrong, I don’t want to die – but the life I’m living isn’t great.”
The college students seated around 21-year-old Matthew Young in Transplant House’s programming space are all within a year or two of his age. They are listening to him describe his lifelong battle with digestive health problems – a condition, he says, that began at birth and which he and his parents have managed ever since – and asking him questions about the challenges he has faced on the road to transplant and his hopes for a small bowel transplant that would reduce his need for hospital stays and give him a new life. The procedure is not without risks, but Matthew is clear that the risks are worth the chance at an improved quality of life.
For these aspiring medical and social work students from CWRU’s Case Collaborative program, Matthew brings home a reality of transplant that they may not have had to consider before: that people their age (and younger) need transplants too. Just a few years ago, Matthew was like the students gathered around him, enrolled in classes and making choices about what to study. But his declining health cut his time in college short and, as he tells the students, he’s not sure if he will go back even if he is transplanted.
“The survival rate for an intestinal transplant is 100% for one year and 80% for five years,” Matthew says. “I won’t know how long I have [post-transplant] and I’m not sure I want to spend the time I do have in school.”
Born with megacystis-microcolon-intestinal hypoperistalsis syndrome (MMIHS), a rare disorder caused by a genetic mutation that affects the muscles lining the intestines and bladder, it took 18 years to receive a diagnosis. Prior to that, Matthew says he remembers always feeling hungry. And it wasn’t because he wasn’t eating – quite the opposite.
“I would eat constantly,” he says, “but I would never feel full or like I had eaten.”
For seven years, from 2013-2020 he was frequently in and out of the hospital and relied on a feeding tube for nutrients. The muscles in his intestines and bladder don’t function properly and, as a result, they don’t absorb nutrition or pass food through the digestive tract. He also has difficulty absorbing medications – making pain management often ineffective.
Matthew and his mom, Delinda, were life-flighted to Cleveland from Seattle at the end of November. He came to Cleveland to undergo a surgery to remove his small intestines. When they arrived, Matthew was transferred to the Cleveland Clinic and Delinda contacted Transplant House to see if she could get a room. In addition to worrying about her son’s health, financial considerations were also weighing heavily on her. She needed a place to stay that was more affordable than a hotel and where she could work remotely. But she also realized she needed other kinds of assistance too.
That is where Annette Humberson, Transplant House’s Social Work Manager, comes in. For many on the transplant journey overwhelmed by the health challenges of a loved one, determining insurance benefits is yet another difficult hurdle. Delinda submitted claims for reimbursement from her husband’s insurance but after being in Cleveland for over a month and hearing nothing from his provider, she was concerned that she didn’t file the claim properly. As it turns out, their insurance will not pay for lodging until he is listed – a problem especially acute for intestinal patients who must remain within a four to five-hour travel distance to stay active on the waiting list. Annette offered support to Delinda when talking to the insurance companies and to call them together if necessary.
Annette also introduced her to COTA (Children’s Organ Transplant Association), a nonprofit organization that specifically supports the families of children and young adults to raise money in support of the costs of transplant.
“We had no idea how we would afford this,” Matthew says. “The four kinds of insurance we have don’t cover everything and won’t cover anything until we hit the deductible of $7,000.”
In addition to Annette’s counsel and insight, being at Transplant House has presented other sources of help for Matthew and Delinda too. They don’t have a car with them, so House volunteer Dave Davis has driven them to the grocery store and Costco. They are regular attendees at the Tuesday breakfasts and Matthew stops in each morning to pick up a cup of coffee for his mom. And Delinda is always one of the caregivers who signs up for the twice-monthly caregiver massage sessions, performed by volunteer and licensed masseuse, Deann Lentz. For Delinda who has arthritis, these sessions are a source of comfort.
“All of this has been a lot less stressful on my mom because of Transplant House.”
While Matthew remains unsure of how long he and Delinda will have to stay in Cleveland (they’ve now been here four months), a reduced nightly rate provided by the House’s Family Assistance Fund and the introduction to COTA have eased the financial pressures the Youngs face. In the few weeks that Matthew’s COTA fundraiser has run they’ve raised nearly $18,500.
Matthew is still waiting to learn if he will be eligible for transplant. He hopes to go before the selection committee soon, but the process has been a long and frustrating one.
“The transplant psychologist at the hospital doesn’t think I understand all the risks,” Matthew shares with the students, “but they also haven’t told me what I should be doing before I meet with them again in April.”
Annette has stepped in here too – preparing Matthew for the meeting to show that he is a strong candidate for transplant. As is often the case with patients and caregivers, Annette has to balance being an advocate for them, while also giving them the tools and knowledge to advocate for themselves. She connected him with one of our House volunteers and intestinal recipients, and with Transplant Unwrapped (an educational organization focused on intestinal disease, failure, and transplant) as resources to help him prepare for the next steps on the road to transplant.
“I know the risks: death, rejection, failure,” Matthew says, “but the alternative is how I live now dealing with constant dehydration, a restrictive diet, and the pain and discomfort from the stoma. I know what I want to have done.”
As the meeting with the Case students winds down, Matthew shares a little about his hopes for post-transplant life and what he misses most: riding his motorcycle (he has a photograph of it in his room at Transplant House). One of the students pipes up that she loves riding too and hopes he will get back to doing it soon. Another student asks him if there has been anything positive about this experience so far. Matthew thinks for a moment before answering.
“Transplant House gives me support when no one else does.”