Tossing several varieties of herbal tea on his kitchen table, resident Michael Vastarelli made a selection as water boiled in the kettle. His rescue dog, Cookie, gnawed on a toy, trying to get at the peanut butter hidden inside.
But Mr Vastarelli’s attention soon wandered from the steam rising from his mug and Cookie’s wagging tail. He was seeing the past — a time in 2006 when he was 26, and received a diagnosis of Alport syndrome, a form of kidney disease. He was in a relationship, and would soon start a new job. Also around that time was a routine doctor’s appointment, which led to a specialist, his diagnosis, and, eventually, his life with dialysis.
He said, “[During 2006] I was in a relationship that was looking more and more like it was headed towards marriage.” That relationship would end after his diagnosis. That year was also his first year of graduate school. Dialysis did not start until the summer of 2013, he said.
“Most people heading into their 30s are heading into careers or families, and I was thinking about this,” he said.
Skipping ahead to 2015, he wrote in a recent e-mail: “I’m pretty sure there aren’t a whole lot of 30-something professionals trying to balance work/life and dialysis.” Aside from a daily routine that includes his at-home dialysis treatments and management, he is also on an organ donor waiting list through Yale New Haven Hospital.
He described dialysis as a “chronic burden that involves constant doctor checkups, nightly rituals, and makes something as simple as visiting my sister’s house in Durham a huge chore.” While he said he has “been very hesitant to talk about any of this” to date, “very few people have come forth to donate and none of them have been a good match.” Unless he finds a donor sooner, he is looking at a wait of roughly two years on Yale’s list.
But Mr Vastarelli also has reason for inspiration. His stepfather Herb Rosenthal’s friend Kevin Cragin “was in a similar predicament” roughly ten years ago, Mr Vastarelli recalls. He remembered that Mr Cragin was on dialysis. Mr Cragin had placed a notice in The Bee and “It ended up finding its way to one of his acquaintances who turned out to be a perfect match.” He wondered if The Beecould also work for him.
“If anything, it’s very comforting to see someone who’s gone through what I’m going through and safely made it to the other side. That’s really all I want here; to be able to live a normal life like everyone else.”
A brief phone call to Mr Cragin this month confirmed that yes, he had placed an ad in The Bee regarding his condition, for reasons including clarification of what people around town had heard. A friend he grew up with learned of his illness, and this friend turned out to be a perfect match, he said. Today, roughly a decade after his transplant, Mr Cragin said, “It’s true” that pursuing a normal life afterward is possible.
Regarding Mr Vastarelli, Mr Cragin said, “He is young, has his life ahead, relationships, friends — it’s what life is all about.” After finding a transplant, he “can live a normal life.”
Throughout the process, Mr Cragin said, “You need friends, acquaintances to help, and it puts your faith back — everyone wants to help; it’s super.”
Michael Vastarelli’s Story
Mr Vastarelli learned from his doctor in 2006, that he was “a little anemic,” he said. Concerned with some “irregular” test results, his doctor had sent him to a specialist.
Soon, small details such as hearing problems and a recent eye procedure proved to be tell-tale signs of a problem, which the specialist recognized. “I’ve always had hearing loss, and never knew why,” he said. And, Mr Vastarelli had eye surgery to correct the results of a condition that left his eyes feeling gritty. “Imagine smoke from a campfire in your eyes when you wake up,” he said.
He had asked his girlfriend to accompany him to his appointment with the specialist. “I was nervous,” he said. Noting the eye problems, the doctor then asked Mr Vastarelli about hearing loss, which he had not mentioned to the doctor. “That’s when I got nervous,” he said.
“A couple of biopsies later,” he learned he had a hereditary condition called Alport syndrome, which according to alportsyndrome.org is an inherited disease of the kidney that can also affect the inner ear (cochlea) and eye. It is caused by genetic mutations that affect a collagen family of proteins. Collagen is a major part of important tissue membranes that are present in all tissues, including the kidney, inner ear, and eye.
Thinking about those initial days, he said, “I did some reading; there are a lot more people with kidney disease than you know and there are no outward symptoms — things you would attribute to something else, but doctors can pick up easily with routine tests.”
Still sipping at his tea while Cookie finished her treat, Mr Vastarelli tried to explain the problems with his kidneys. He said the disease creates scar tissue and the kidneys won’t filter properly. “They leak a lot of protein,” he said.
“When the doctor first described it, he said there was no cure,” and had then told him he had three to five years. “I took that to mean years to live,” Mr Vastarelli said.
“No, no, no,” the doctor told him, then clarified that the kidneys had three to five years. His girlfriend at the time had done some research and Mr Vastarelli remembers asking her, “Is this a death sentence? She said no.”
He then considered his past years spent managing his condition and the dialysis. “You have to be careful about diet, and the list goes on and on,” he said. “There was a specter of death that hung over me.”
Medically speaking, life was “not without drama,” he said.
Mr Vastarelli set his tea aside and skipped again to the story’s beginning: “To go back, the relationship…I was feeling like things [relationship, life, career] were coming together, but that’s when the relationship derailed.” Since then, dating has been “tricky,” he said.
He will “let a person in,” but can also understand that “to some, it’s a bombshell,” most notably to the woman he had been dating at the time, he said.
Describing in technical detail the things going wrong with his kidneys, how dialysis works, and the forms of treatment, he then talked about his particular method of managing his situation. He has a “nightly ritual” with a cycling machine for drawing toxins from his body. To explain how this works, Mr Vastarelli said, “Imagine you poured sugar on a bowl of fruit. The sugar would ‘leech’ water from the fruit through osmosis. Dialysis works the same way. The sugar in the solution draws water out of my body and along with it, toxins. The cycler continually flushes water out of my abdomen so that this ‘osmosis’ happens continuously 24/7.” His particular method of dialysis is “a continuous process so I never feel ‘sick’ from treatments,” he said.
The “cycler” is nice, and takes just a few minutes to set up. He hooks his catheter to it at night, attaches, and the machine does the work of bringing fluids into his body and flushing the toxins out through another tube.
The Trouble With Travel
Taking weekend trips to Durham to visit his sister or take a week’s vacation, for example, is “a big deal. I have to lug the cycler with me.”
He mentioned that a friend wanted him to go to Utah for a week, which “would take a lot of planning.” Going to Vermont for a night to go skiing would require permission from his doctor. He would need extra dialysis before and after due to skipping one night. “So, it’s a nuisance. Logistics are tough to deal with.”
Also, arranging to travel and coordinating with the company that provides his dialysis supplies is complicated. “Right now I sort of feel like I’m in a holding pattern, unable to really move until I’m free from dialysis. It’s the same thing with family. I’d really like to go visit my father in Florida — especially after this winter— but coordinating getting supplies there is a huge hassle.”
What is life like with dialysis and the need for a transplant? “It’s always on your mind, you’re always thinking about it.” He said, “What happens when you get to a point when things fail?”
Registering for a transplant is also “not a cure,” he said. “It’s management.” A transplant also has its risks of rejection, infection, and more.
Changes entered his life after the diagnosis.
Psychologically? “Prognosis is good, but you think and wonder if you’ll survive.” He said again that “it’s a specter over your shoulder,” always on his mind with “everything I do, every decision. It’s always a factor.”
Relationships? It has a big effect, he said. “They’re tough.” If he just meets someone, should he tell them about his condition before there is any “emotional investment?” He also can’t “wait too long — it’s delicate.”
He said he hears people now “complain about little things, and I think, ‘I wish those were my problems.’” He believes, too, that he has “adjusted to what’s going on.”
His situations is “a chronic nuisance — it’s never ending.” He has frequent doctor’s visits, and a nurse. “That’s what happens when you’re on life-sustaining therapy, you get a direct line to them.”
Mr Vastarelli’s advice? “Many cases — but not mine — of kidney failure can be avoided with routine checkups.”
Anyone wishing to talk with Mr Vastarelli about the possibility of being tested as a good match for a kidney donor should e-mail him at