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08/14/2019 08:30 AMLisa DiStasio discovered she had polycystic kidney Disease (PKD), a genetic disease, by chance. In 2003, after being taken to the hospital in terrible pain, a CAT scan revealed she had not only appendicitis, but PKD.
The kidney cysts caused by PKD grow over time, eventually taking over the organ and causing kidney failure. Doctors told DiStasio she would likely need to start dialysis in 10 to 20 years. They were on target: It turned out to be 15 years.
“I did have a lot of time to adjust to what it was, how it was progressing, what I’d have to do when the time came,” she said. “Of course I hoped that it would be closer to 20 years” before she had to start dialysis. But “I had a lot of time to adjust.”
Many other people, she pointed out, are hit with the news that they have kidney disease along with having to start dialysis right away.
Still, she said, “It is an adjustment.”
Her pragmatic outlook has helped DiStasio deal with her health head on and she credits, at least partly, her time in the U.S. Air Force. DiStasio was on active duty from 1992 to 1997 and then served in the Air National Guard in Connecticut from 1997 to 2002.
After training in various locations, she served in North Carolina, Korea, and Kuwait, as well as in Connecticut. She left the Air Force for medical reasons and, while she didn’t mind having more time to spend with her family—she has two daughters—she liked her job as a munitions-system specialist.
“I made bombs. That’s the short explanation,” she said with a laugh. “I also worked in the office, delivered munitions—everything associated with that...I really enjoyed being in the Air Force and serving and just overall the experience of doing something for the country,” she said.
The discipline of serving in the military, she believes, helped her advance in her banking career to become the branch manager of KeyBank in Clinton. But last year, it came time to leave that position.
“I knew I was going to be leaving to go on dialysis at some point. That combined with alleviating some of the stress,” she explained. The timing “worked out staffing-wise.
“Once I started dialysis in September [2018], I went on disability leave,” she said. “I do [dialysis] three days a week and there’s no way I can work full time.”
The procedure, for which she has to drive from her home in Clinton to Branford, takes around four hours, all told.
“After dialysis I can’t really do anything,” she said. While she is able to drive herself there and back, “I have to get something to eat and relax, because it takes a toll.”
DiStasio will be on dialysis until she finds a kidney donor, either independently or via a donor list. She is currently on a list at Yale New Haven Hospital and is in the process of having her name placed on the list at Hartford Hospital. Waiting for a donor via a list, however, can take six or seven years, she said, so her hopes are on a volunteer stepping forward.
Fortunately, her husband has health insurance through his job at Stop & Shop. And while DiStasio had three surgeries and four or five treatments that incurred out-of-pocket expenses for deductibles and co-pays, she is now covered by Medicare as well. A Go Fund Me page set up by her daughter has helped defray the uncovered medical costs.
The two forms of insurance will cover the medical expenses of a kidney donor, DiStasio said.
“Should a live donor become available, those insurances actually cover the cost of the donor up to and including their post-op,” she explained. “Years from now, if they develop something, it will still cover them.”
Her daughters and husband can’t donate for medical reasons, DiStasio explained. One source of hope is a more recent method of matching donors to patients called a cross match, paired donation, or swap program.
“Say someone isn’t a match or isn’t a perfect match but they want to donate to me,” she said. If there’s another would-be donor who is a better match, “my donor donates to [another patient] and their donor donates to me. We get perfect matches and much better results. They can do that with two; they can do it with three. Everybody gets the best possible match and it’s not wasted.
“And that’s really something a lot of people are not really aware of,” DiStasio said. “They think if it’s not a compatible blood type, they can’t do it.”
DiStasio has found support in her family, her community, and her faith, she said.
“I belong to the VFW post 9918 in Clinton,” she said. “They’ve offered their assistance if I need something and they also donated to my Go Fund Me” campaign.
Her church, Grace Episcopal, has been part of her life since she was a child growing up in Old Saybrook.
“In addition to my family, they’ve been such a support for me and it’s just wonderful,” she said. “Talking, calling, donating to my Go Fund Me, and just the prayers for healing. Putting the word out that I need a [kidney] donation.”
Information about becoming a donor is available by calling Hartford Hospital at 860-972-4219 or Yale New Haven Hospital at 203-925-3897.