At roughly 10:15 Christmas morning, 2018, resident Michael Vastarelli, 38, received a kidney transplant.

“The doctors said the organ is working as well as it can,” he said during an interview less than two months later, on February 14.

On dialysis since the summer of 2013, and more recently, also on the organ donor waiting list through Yale New Haven Hospital, Mr Vastarelli said, “In the beginning, you know [a transplant] is in the distance, but as you get closer, you have a date in mind — you could get a call tomorrow or in six months — it feels perpetual; you know there is an ending, but not where. Psychologically, it’s difficult.”

His 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 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 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.

Waiting For A Donor

“The tricky part with a transplant list is, there is a general timeline, but it is finicky,” he said.

The uncertainty of time on the list, “can mess with your head. Many times, I thought I was going to just die. The goal posts move. The list keeps getting longer,” Mr Vastarelli said. “There were times I thought I would die or just wanted to quit — it’s not going to happen, why bother?”

In September, he received a call from the pre-transplant coordinator saying he was third on the list to receive a kidney. He had been active on the donor list since 2012.

Sometime later, on a Sunday night, he was at a family party in Guilford. “I said, off-hand, [Yale] could call tonight…” referring to when he might receive the call for a transplant. Once back home in Newtown, he listened to a “garbled” voicemail, from which he could not decipher the phone number.

“I called the main [Yale] number to get through,’ he said. The call had come on Monday, December 24, 2018, and another call came at midnight — Christmas morning. “They said, ‘Stay by the phone.’”

And at 3 am, he received another phone call. “They said, ‘The kidney is good.’ They said, ‘Come now.’ I was there by 4:30 am.” Just hours later, he had a new kidney.

Transplant centers are broken into regions. Yale is in region one. This region contains Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, and Eastern Vermont. Mr Vastarelli’s donor was from the Boston area, he said. (Learn more at optn.transplant.hrsa.gov/members/regions) He knew only the basics about his donor: a 26-year-old male, drug overdose.

But even as he was wheeled into the operating room, hospital staff said, “Don’t get excited, wait until after the surgery, because so much can go wrong.”

A transplant is “traumatizing to the body,” he said. “It doesn’t matter how young you are.” Physically in good shape going into the surgery, the operation still took a lot out of him, he commented.

He does not remember much after entering the operating room, he said. “The first thing I remember,” post-surgery, “I asked the nurses if I was still alive, and I said, ‘I really need the bathroom.’ After that, it’s hazy,” Mr Vastarelli said. “I kept asking, ‘Did the kidney work? Is it really there?’”

He learned that the surgery had gone “as smooth as can be,” he said. “I remember a few people talking.” He mentioned his mother, Michelle Rosenthal; sister, Lauren Collingwood; and nephew, Damien Pastore. Three days later, on Friday, December 28, he left the hospital. “It was a lot to process. Physically, I was sore. People said I had more color …”

However, Mr Vastarelli said, “I had never felt sick. I want to say I felt better, but I felt the same.”

After five years of at-home dialysis — a nightly ritual was preparing and hooking up to his dialysis machine for a nine-hour period — he said the transplant was “psychologically difficult.” He mentioned Stockholm Syndrome, which is “a condition that causes hostages to develop a psychological alliance with their captors,” as defined by wikipedia.org.

“The first night I got home and went to bed — no need to hook up,” he said. “It was elation, then, wait, don’t I need the machine? It basically kept me alive,” Mr Vastarelli said.

Good Timing

His “numbers were harder to control,” Mr Vastarelli said regarding his vital signs and phosphorous levels, for example. Too much or too little of something could “cause bad things to happen,” in his body.

“A lot of things are different,” weeks after his transplant, he said. Being free of his “nightly rituals of dialysis and medications,” is a “luxury. No more scrubbing hands and medications, hooking up, and starting up the dialysis machine.”

When Mr Vastarelli first spoke with The Newtown Bee in 2015, he had described his “nightly ritual” with a cycling machine [dialysis procedure] for drawing toxins from his body. He 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” took just a few minutes to set up. He hooked a catheter in his abdomen to it at night, attached, and the machine did the work of bringing fluids into his body and flushing the toxins out through another tube.

But since his operation, “I just go to sleep,” when he is ready for bed, Mr Vastarelli commented.

In past weeks, he has made several “weird discoveries,” he said. Free of his hook-up with the cycling machine, he said, “I can get out of either side of the bed.” Previously, “With a machine and a tube connection, it limits your options, and I had to plan to be hooked up for nine hours.”

Grief and Joy

Propped on his kitchen table recently was a folded letter. He received it “from a grieving mom,” he said. The donor’s mother chose to contact Mr Vastarelli recently.

The hospital facilitates communication between the donor family and recipient, he said, and the process can happen anonymously, but those involved are also free to exchange contact information.

“I knew I would write a letter to the family,” he said. “Even on the day of the surgery, I was formulating things to say.” He has not yet written a letter, but the donor’s mom “sent me a letter. She put her name and e-mail and phone number in it.”

He looked again at the folded paper on his table. “I never had something like that addressed to me. From the letter, I learned [the donor] has brothers, nephews, nieces, and she described him as ‘full of life.’ That caught me off guard.” Since his surgery, he has had a sense that the family “would be part of my life.” After reading the mother’s letter, he said, “I knew it would be the same for them. Their son died,” and Mr Vastarelli now has a new start on life.

“I am planning a letter. I have ideas of what I’ll say,” Mr Vastarelli commented. He said the question now is, “How do I do it? Go through the hospital? Call? E-mail?”

The Future

Does he view his future differently since he has a new kidney?

“There is a lot I can do that in the last few years I could not do,” Mr Vastarelli said. “I want to visit my friend in Brooklyn. I want to travel more. I want to visit my step-sister in Japan. It was out of the equation before.”

Living with dialysis had made travel cumbersome.

“Once I carpooled with coworkers to Pennsylvania. I remember loading my dialysis things, and [one coworker] was stunned. Aside from the cycling machine, were the nightly boxed packages of fluid, which took up space, Mr Vastarelli said.

He had visited his dad, James Vastarelli, in Tequesta, Fla., for two weeks, and had his dialysis supplies delivered to his father’s house. “Dad called and said, ‘The shipment is here. It’s taking up one wall on the porch.’”

Life holds some changes, but “a lot is the same.” He is back to the gym and was cleared for work as of Monday, February 18.

His diet is also different. “What was off-limits now is fair game.”

Protein is “back on the list,” he said. Also back are dairy, chocolate, and peanut butter, he added. “I had a bowl of cereal, and I was in heaven.”

Sushi, however, is off his list. “I’m having a hard time with that,” he said. Going to crowded places such as restaurants is also “Iffy. My immune system is compromised.”

Enjoying a new diet is nice, he said. When on dialysis, “There were so many forbidden foods.” He also no longer needs certain pills “to bind with phosphorous,” which was previously a concern.

Phosphorous is a mineral that the kidneys are supposed to filter out of the body, he said.

Explaining that although phosphorous is essential to the body, too much causes calcification. “It will leech calcium from your bones and redistribute it. You’re hollowing out your bones.”

And where would the calcium redistribute? “It will go where you don’t want it to go,” he said, and then mentioned calcification of the heart.

He was diligent about checking food levels for phosphate, he said.

Dialysis also is not very effective at filtering out phosphorous, which is why binders are typically used to prevent the body from absorbing it. “Binders themselves are also not too terribly efficient, which is why multiple pills need to be taken with each meal,” Mr Vastarelli said. “I was on two different binders: Auryxia and Renvela. Between them, I would need to take seven pills every time I ate. That, coupled with a very low phosphorous diet, barely kept my numbers in an acceptable range.”

He also mentioned that too much potassium in the blood could cause a fatal arrythmia.

In Retrospect

“Dialysis never really bothered me or scared me,” Mr Vastarelli said. Then he added, “It’s weird. I am now more afraid of dialysis than I’ve ever been. I was there and never want to go back again.”

Mr Vastarelli “is afraid of sabotaging,” his new organ. He was surprised to learn from medical staff that often organ transplant failure occurs from “self-sabotage caused by people,” by making mistakes with their medications.

He is currently taking immunosuppressants to protect his organ form his immune system. He takes these pills at 12-hour intervals, he said. However, a patient might miss a dose. “It happens,” Mr Vastarelli said. “People might miss a day, but they feel fine, then miss another day and then they won’t feel fine anymore; their immune system is quietly destroying the organ.”

After his surgery, “People would ask me how I feel. It took me a couple of weeks to come up with an answer,” he said. He had told them he felt better or felt good, but that answer was not entirely true.

“I never felt sick before, but I felt different.” He pondered how to explain this feeling so it made sense.

“Then it became clear,” Mr Vastarelli said. “It’s like someone took my body and rewound it ten or fifteen years.” He felt “stronger.”

He has lost 25 pounds of fluid since the surgery, and when he once would “get cold quickly, now I don’t,” he said. “My body reacts differently, feels stronger, and there a side that wants to see what it’s capable of.”

“[Dialysis] is a chapter now closed. If I could spend the rest of my life never stepping foot in dialysis, I’ll be pleased,” Mr Vastarelli said. “As much as I don’t want to remember, I do want to remember. It’s important to know where you came from, but that chapter is closed.”

He is looking forward to the one-year mark from his transplant. “I can sky dive again. After a year, the doctor says I can go.”

Yale New Haven Hospital

According to ynhh.org, The Yale New Haven Transplantation Center (YNHTC) kidney transplant staff “has earned a national reputation for its clinical and academic excellence and is recognized as a national leader in clinical research. YNHTC specializes in matching potential kidney donors, and our surgeons perform both right and left total laparoscopic donor nephrectomy, unlike many transplant programs that perform the left side laparoscopically, while using open surgery for the right side.

“The physicians, nurses, and staff affiliated with the kidney transplantation program are experts in transplantation techniques, anti-rejection (immunosuppressant) drugs, post-transplant care, and the management of related health conditions of patients with kidney disease.”

The site also provides information about becoming a donor, stating “You can save lives by becoming an organ and tissue donor. More than 114,000 people in the United States are waiting for an organ transplant. Options for organ donation are living organ donation and/or deceased organ donation. We encourage you to learn more.” Contact the transplant center at 866-925-3897.