Carolyn Gazzillo of Florence has a strict and exhausting weekly routine, and as difficult and debilitating as it is to maintain, she pushes through the pain and fatigue because it is literally her only hope of survival.
In 2013, Gazzillo, who worked in the cafeteria at JFK Middle School in Florence, began feeling sickly. The diagnosis: kidney failure. Her doctor promptly put her on a regimen of dialysis treatments, the process which removes waste and extra fluid from the blood.
Since then, Gazzillo, 66, has spent her Mondays, Wednesdays and Fridays, for five hours each day, receiving treatment at Fresenius Kidney Care on Conz Street in Northampton.
“I don’t know how she does it, it takes so much out of her and the longer she is on it the harder it gets,” said Diane Punska of Williamsburg, Gazzillo’s lifelong friend. “She has so much life left in her, but now, I sometimes feel like I am watching her fade away.”
And so, as Gazzillo, who is on a national waiting list to receive a kidney from a deceased donor, waits for a call, Punska has been working to get the word out to find a living donor for her friend before it is too late; due to various medical conditions, no one in Gazzillo’s family or circle of friends is eligible.
“I can’t just sit by and watch this happen without trying to do something,” said Punska, who is also 66.
Punska would like to start a Facebook page or use other social media approaches to find a living donor. However, she needs assistance from someone who is more Internet savvy than she is to do so.
“I know that has worked for other people,” she said, “so maybe it would work for her. Anything we can do to get the word out to someone who might be willing to donate, is worth trying.”
Unfortunately, Gazzillo’s situation is not uncommon. According to the National Kidney Foundation, one in three Americans is at risk for kidney disease and one in nine adults have it though many don’t even know it.
Kidney disease is the ninth leading cause of death in the United States, the foundation says, and of 118,000 Americans currently on the waiting list for a lifesaving organ transplant, more than 96,000 of them need a kidney.
Nationally, fewer than 17,000 people receive kidney transplants each year. Baystate Medical Center, the only hospital in the area that does these surgeries, performs about 30 to 40 a year, according to Pam Fisk, the manager of Transplant Services there.
“The best choice is to find a live donor,” Fisk said. “But people feel funny asking for something like that because it is a very big ask.”
Punska and Gazzillo have been connected, literally, since birth.
“We were born on the same day at Cooley Dickinson,” Gazzillo said. “Our mothers met while they were in the hospital.”
The girls became best friends in kindergarten, met their future husbands while at JFK Middle School, double dated, attended each others weddings and kept in close touch as they raised their families.
“We did everything together, it is a wonderful friendship,” Gazzillo said.
Now with their children grown, the foursome, which includes husbands Bob Gazzillo and David Punska, was looking forward to retirement and rekindling the active camaraderie, travel and adventure they shared before they had family responsibilities.
Punska has been retired from her job at Williston Northampton school for a few years. Gazzillo retired recently after working in the Northampton schools for 28 years.
However, being on the waiting list to receive a kidney transplant means Gazzillo must remain close to home in case a call comes.
“It makes it difficult because you never know where you are on the list,” Bob Gazzillo said. “Whenever a kidney becomes available you have to be ready at that moment.”
Locally donated kidneys that are not specifically donated for a particular individual, used to stay within the New England area, but now they are made available nationally and go first to those with the most critical need, says Fisk of Baystate.
To complicate matters, Gazzillo’s blood type is AB positive which is rare. She says that to receive a kidney from a deceased donor through the national transplant list, it is now required that the blood type of both donor and recipient match. That further narrows her chances of receiving a transplant.
However, were Gazzillo to receive a kidney from a living donor, blood type would not be a limiting factor, says Fisk, since all other factors in these cases are more favorable to success.
The average wait to receive a kidney is five years. Gazzillo, whose health is declining, has been on dialysis for 3½ years.
During dialysis, blood travels through tubes inserted in the body into a machine where it goes through a filter called a dialyzer removing waste and extra fluid. The filtered blood then travels through tubes from the machine back into the body.
Gazzillo spends a large chunk of her Mondays, Wednesdays and Fridays sitting in a room with roughly 20 to 25 other patients, all hooked up to these machines.
Bob Gazzillo said that while visitors are allowed in at certain points during treatments, for the majority of time they are discouraged from attending in order to reduce the possibility of infection.
“The dialysis people are wonderful and they have been very accommodating and very good to me,” Gazzillo said.
Still, the treatment is harsh on the body. While receiving dialysis, Gazzillo has had numerous problems with the sites on her body through which the treatment is administered.
“They have clogged and failed so many times that they have run out of places to put in any more, except for in places that would be very difficult and unpleasant,” she said. “I try to stay positive, but that is harder on some days.”
Gazzillo started with a temporary port in her neck, but due to risk of infection over time the port, as is usually the case, was replaced with intravenous connections in her arms. But veins cannot withstand repeated needle insertions and eventually collapse.
Now Gazzillo has an arteriovenous fistula in her arm, which is a surgically created connection between an artery and a vein. This allows extra blood to flow into the vein, making it grow large and strong, which provides more reliable access to blood vessels. Without this kind of access, regular dialysis sessions would not be possible.
Every three months, Gazzillo must go to the Vascular Center in West Springfield to have the graft in her arm checked for clogs.
“Before she goes in for dialysis, she has to put a numbing cream on her arm so the treatment isn’t as painful,” Bob Gazzillo said. “When she comes home she is exhausted and has to rest. She has a day in between then it starts all over again.”
When at home, Gazzillo says that she gets a lot of support from her daughter, Rebecca Baldyga, 39, of Hatfield and her son, David Gazzillo, 37 of Williamsburg.
David, she said, helps out around the home when he can, and his time is appreciated as he himself has a young child and his wife is expecting twins, she said.
“My daughter is a nurse so she goes with us to all of the medical appointments, Bob Gazzillo said. “It is helpful because she understands the medical terminology and helps out with all of the medication that Carolyn takes.”
Fisk said that there are people who call her wanting to donate a kidney.
“They are very altruistic souls and it is a wonderful and unbelievable gift,” she said. “A lot of people want to offer, but they don’t know how to go about it.”
Fisk said that potential donors go through comprehensive medical testing to make sure they are not only a match for the patient, but healthy enough to successfully donate a kidney without any repercussions for themselves.
“People can absolutely function with one kidney. Many people are born with only one kidney and they live healthy, normal, productive lives,” Fisk said.
The benefits for the recipient of finding a live donor include an immediate and direct transplantation from the donor, says Fisk, which usually means the kidney begins working immediately.
According to the University of Massachusetts Memorial Medical Center Transplant Program in Worcester, the national survival rate for live donor kidney transplants is about 98 percent after reaching the one-year benchmark, with failure rates only around two to three percent within the first year.
Punska said that the chance of Gazzillo running out of time is something she tries not to focus on, preferring instead to put her faith in the possibility that a donor will come forward.
“It’s happened for others, it would be wonderful it could happen for her,” she said.
Anyone interested in being a live kidney donor for Gazzillo, another specific individual, or an unknown recipient can contact Baystate Medical Center’s Transplant Services at 794-2321, or visit their website at: www.baystatehealth.org.
For more information on Kidney disease, kidney donation and transplantation, visit: The National Kidney Foundation at: www.kidney.org.
Fran Ryan can be reached at fryan.gazette@gmail.com.