When we first shared about Matthew Young’s journey in March of this year, he was unsure if he would even be listed for an intestinal transplant. 21-years-old, Matthew has been living with medical challenges since birth. His parents, Delinda and Steve, felt the helplessness and frustration that any parent would feel when faced with their child dealing with pain they could do little to alleviate. And for the first 18 years of his life, Matthew and his parents did not even have a diagnosis (he was ultimately diagnosed with megacystis microcolon intestinal hypoperistalsis syndrome or MMIHS).
Their 1,000+ mile journey to Cleveland from Seattle by air ambulance offered Matthew the hope of an improved quality of life. While an intestinal transplant would not be a cure (there is no cure for MMIHS, only treatments to manage the condition), it could alleviate some of its symptoms. The treatment was not without risks, but Matthew felt strongly that they were worth taking if it meant he could live a fuller life with fewer hospital stays.
Talking with Matthew now, 4 months after transplant, it is apparent what having the procedure has meant to him. He’s bursting with plans for his future. His uncertainty now is about whether he’ll be admitted into an internship for a railroad engineering position, one in the medical field, or return to school to become a nurse practitioner.
His motivation is the doctors and nurses that he spent most of his childhood and young adulthood around at the children’s hospital in Seattle.
“They were all great there and they knew me on all the floors. My surgeon was serious when he had to be, but he could also be funny.”
He recalls playing cards with medical staff, receiving small gifts (an apple he was craving, a piece of candy) from staff, and even getting a haircut from one nurse. Though Matthew doesn’t say so in the exact words, it’s clear that he would like to be on the other side of the patient/nurse divide and bring his experience as a pediatric patient to help care for others. He also jokes that he’d like to take some things from pediatric medicine to adult care – particularly Band-Aids.
“Why do the adults only get the boring ones?”
But even his jokes reveal just how much Matthew wants to bring the warmth, empathy, and humor he experienced while a patient to the next generation of young patients. And he is driven by a curiosity about medicine too. He is hoping that he can reconnect with a surgeon in Seattle who suggested he observe a stoma surgery – a procedure that Matthew himself has undergone.
His time at Transplant House with his mom has presented its own challenges. Delinda, who worked from home in their 1-bedroom Transplant House apartment throughout their 10 month stay, recalls doing so while Matthew played videogames in the next room. For his part, Matthew seems ready to have a room of his own again.
“I thought about mom and I taking the train back to Idaho instead of flying, but two or three days in a compartment together I don’t know if we could do it,” he says with a laugh.
But both are grateful for the support they received at Transplant House. The House’s transplant social worker, Annette, helped Matthew’s parents with insurance claims, introduced them to COTA to help secure fundraising (they raised almost $26,000), and connected Matthew with other intestinal transplant recipients and Transplant Unwrapped to help him feel better prepared for transplant and life after. And Delinda felt supported as a caregiver.
“Being a caregiver is full of challenges. You have to pick your battles,” Delinda says. “And seeing him in pain before and after the surgery was very trying – very hard for a parent to see something and not be able to do anything to fix it.”
As they prepare to leave for home, Delinda is looking forward to sleeping again in her own bed and Matthew is excited to spend time outdoors with his dad and older brother, Spencer. His parents’ home in Idaho is only a short distance from the Rocky Mountains.
But Matthew has big plans for his return trip to Cleveland for a checkup next year too.
“There’s still a lot I want to see around Cleveland. I saw the Rock Hall, but I still want to go to Cedar Point and make a trip to Niagara Falls.”
Matthew is already on his way to living a fuller life made possible by transplant.