BRATTLEBORO — Casey Bozetarnik, retired from a long career as a teacher, guidance counselor, and principal, describes himself as a man who loves “working with kids who have emotional and behavioral issues, or when they are just like a round peg in a square hole.”
And now he and his wife, Pat, are reaching back to generations of the families he touched in his education career, hoping to find a volunteer candidate to match him with a healthy kidney.
Last October's diagnosis gave the Bozetarniks an explanation for the constant medical issues that plagued Casey since the beginning of his retirement in 2015.
“I wasn't feeling well, and I came down with shingles,” Casey said.
The shingles were followed by intermittent loss of eyesight. A specialist told him that he could cure his eye problems by controlling his blood pressure, which worked for a short amount of time.
His doctor “didn't like the looks of my last blood test” and referred him to a kidney specialist in Keene.
“Turns out, my kidney numbers were way off,” Casey explained.
But every answer yielded more questions. How do you go about getting a kidney? What can you do in the meantime? How long will it take to get one?
Tethered to a machine
Right away, Pat Bozetarnik got in touch with the transplant team at Dartmouth Hitchcock Medical Center in Hanover, N.H., and discovered the only way to circumvent the five-to-seven-year waitlist for a kidney from a deceased donor.
She learned that the alternative - getting a kidney from a live donor - also offers the best outcome for transplant because “kidneys begin functioning within hours, while from a deceased donor the kidney may take up to a month to start working,” she said.
However, for a kidney transplant to occur, both the receiver and donor must be healthy.
The Bozetarniks first looked to relatives and close friends, but “all of my siblings and all my friends are too sick,” Casey said.
So, from then on, they decided to reach out everywhere to everyone they could think of - including Facebook.
“Believe me, we understand what an amazing sacrifice this would be. But the transplant team tells us the biggest reason people don't get a live donor is because you don't ask. So we are asking!” Pat posted.
And while the search continues, Casey is on home dialysis to keep his kidney functioning at “30 percent of a normal kidney.”
Dialysis - a medical procedure that artificially replicates the function of the human organ - exists as “a treatment that keeps your body in balance,” Casey said.
But it is no easy task.
“I hook up [to the dialysis machine] at night. I go through the process six times over the nighttime hours. I disconnect in the morning and then I do one during the day,” Casey explained.
“He's on the machine for 11 hours out of a 24-hour period of time,” Pat said.
Dialysis keeps you alive, but “it doesn't necessarily give you the quality of life,” she added. “It raises havoc on your body.”
On the list
And as the Bozetarniks wait, they worry about the decline in Casey's health.
“The only way you can get a transplant, and, I know this sounds really strange to say, is if you're healthy,” Pat said.
“[I]n 2014, 4,761 patients died while waiting for a kidney transplant. Another 3,668 people became too sick to receive a kidney transplant,” the National Kidney Foundation reports.
The nonprofit also states that “13 people die each day while waiting for a life-saving kidney transplant” and that “every 14 minutes someone is added to the transplant list.” The need for donors remains dire. And waiting for one does no good.
Casey's blood type - type O - also holds him back. Recipients with type O can obtain a kidney only from a donor with type O blood, not the case for other blood types.
However, Dartmouth Hitchcock Medical Center has a loophole.
As described by the National Kidney Foundation, an exchange system with multiple donors and multiple blood types “allows two transplant candidates to receive organs and two donors to give organs though the original recipient/donor pairs were unable to do so with each other.”
These realities came as a surprise to the Bozetarniks.
“I think a lot of people don't know these things - we certainly didn't,” Pat said.
“You don't really come to an understanding until you're caught up in the grips of it,” Casey said.
Casey will probably never learn why he needs a kidney transplant; as he reports, his doctor has told him that “sometimes it really just is the luck of the draw.”
He and Pat hope not only for a kidney for him, but also for other organ donations for other people.
“I know that it's out there, but just highlighting the need for people to agree to donate. Because seven years - that's unbelievable,” Pat said.
The couple hopes to spread the demand for organ donations as they move forward in their own search.
“I'm absolutely amazed by the number of organs you can donate. I mean, it's amazing,” Pat said. “And I just think people don't think about it. You don't think about it until you need it.”
“I appreciate the opportunity to talk about this - not only for me, but for all the other people out there who need transplants. It's pretty amazing,” Casey said.
Former students spread the word
Since sharing the news of their search on Facebook, the Bozetarniks have received multiple responses from students whose lives he touched over the years.
“My thoughts and prayers go to u. Will definitely b posting this on my fb page... how does one find out if they could b a match. I think of u often. As do my parents... u r such a great guy. Power in prayer... much love,” wrote one former student in reply to Casey and Pat's appeal.
“Ugh geez. so sorry to see this post. Mr B I didn't know much in 6th grade in guilford but looking back I was very fortunate to have you as a teacher. one of my all time favorite teachers and person. Wishing you the best and sending much love and prayer. Hang in there!!” another former student wrote.
“Casey loved teaching, and he loved his students. He and Patty would often volunteer to go on trips that the students would go on, even after he retired,” said Judith Wisell, Casey's sister-in-law.
“When you have known someone as long as I have Casey, there are so many things you don't stop and think about,” she added. “He is just so deserving of having someone think about donating.”
Throughout the waiting process, the Bozetarniks have focused on the positive.
They draw comfort in the fact that Casey is on the recipient list and so “we know we are getting a kidney,” Pat said.
“We just don't know when.”