Matthew Bustamante is a Windermere teen who is in a race against time to find a kidney donor who could save his life.
The bad news arrived with no warning.
It was June 20, 2017. Matthew “Matt” Bustamante, 19, had gone to the doctor for a physical exam to check his health because he’d recently had trouble gaining weight.
His mother, Lisa Largue, had expected something benign, perhaps a thyroid issue, given her own medical history with thyroid problems. But what they learned later came as a complete shock.
Chronic Kidney Disease, the doctors informed them. Stage 4, they added.
Matt, who only recently graduated from high school in New York and now lives with his family in Windermere, was born with undersized kidneys that now threaten his life.
At the time of diagnosis, Matt’s kidneys were functioning at 24%, leaving everyone baffled as to how he’d managed to avoid showing any serious symptoms for so long. The few symptoms that did manifest did not cause any suspicion on his family's part.
"I still don't really feel that bad considering how far along I am, at least compared to the things I've read, and how crappy other people feel,” said Matt, who is described by his family as a positive, comical guy. “So I guess I'm lucky in that respect.”
His brother, Miguel, was quick to respond, showing deep concern for his brother’s situation.
"Luck is not a word I would use in this situation,” his brother said, as a heavy silence descended on the family.
It’s now been a year since Matt was made aware of his failing kidneys, which are now functioning at about 12%.
The once energetic 19-year-old takes several medications, adheres to a strict diet, and finds himself dealing with sleepless nights and unable to continue his hobby of playing basketball due to fatigue, as his body diverts all its energy to operating his kidneys.
He’s essentially had to place his life on pause including his goals to work for Disney, attend college and pursue a career in film.
“I know he's a kid who wants to do a lot with himself, but unfortunately right now, it's just all on hold,” said his mother.
Matt and his family are working to find a willing kidney donor who could serve as a potential match for Matt. So far, eight people, mostly family members, have been tested as potential matches for Matt, with no success.
“All of us were tested and, unfortunately, everybody was ruled out,” said Barbara Downing, Matt’s grandmother. “I'm too old. His brother, you know, being that it could be a genetic thing, they don't want to take his kidney because if something happens to his kidney, he'll only have one left. And Lisa was diagnosed with kidney disease when they tested her.”
Although Matt’s mom was a match for Matt, further testing revealed that she, also, had kidney disease.
“I found out during the evaluation because I was a match for him,” Largue said. “But once I did the 24-hour urine test, they called me, and said, ‘Lisa there's a problem.’And I was like, 'Oh, what now? Come on, how bad could it be?' So she told me while I was at work, and I was like, 'You've got to be kidding me.' I was hysterical.’”
Other close relatives and friends were tested. Another person turned out to be a relatively close match, but they could not do it for personal reasons, the family said.
Now, it's just a matter of getting the word out that he desperately needs a donor – Ideally, before Matt’s kidneys reach 10% function, at which point he would have no choice but to start dialysis therapy, Downing shared.
Dialysis is a mechanical way to remove waste from the body that a person's damaged kidneys are unable to eliminate. However, the process can be extremely unpleasant and generally only prolongs life expectancy by about five to 10 years, according to the National Kidney Foundation.
“You never know, there might be people out there willing to donate kidneys to non-family members,” Downing said. “But if he doesn't get a transplant within two months, the doctor said he's going to have to go on dialysis, judging by the way his numbers are going. The ideal situation is to transplant before starting dialysis because dialysis depletes your body and doesn't make it as healthy to accept the new kidney.”
Matt was placed on a national registry nine months ago that serves as a waiting list for people in need of kidney transplants. However, the supply of kidneys from deceased donors has not unable to keep up with demand. According to the Living Kidney Donors Network, about 5,000 people die every year waiting for a kidney transplant and Matt also is running out of time.
The family hopes to find Matthew a living kidney donor, if possible, to limit his wait time and because a transplant from a deceased kidney donor versus a living donor tends to affect the life expectancy of kidney recipients. On average, recipients live approximately 18 years with a kidney donated from a living donor compared to 13 years with a kidney from a deceased donor, according to LKDN.
For now, the family continues to spread awareness of Matt’s situation via his blog, social media, car decals and a self-designed T-shirt Matt created himself. They hope to find a match for Matt before it’s too late.
“We know it's a big ask. It's a big ask because you're literally asking for a body part,” Matt’s grandmother said. “But it could save a life. It could save his life.”