Sparta woman celebrates 30 years since transplant

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  • Allison (second left) with her family: husband Bill, and step-adults Andrew, Chrissy and Will Ognibene.

  • The NJ Sharing Network hanging ribbons on March 30, the start of Donate Life Month. Ognibene is the one with her arm up with a big smile holding the ribbon.

When Allison Ognibene was a freshman in high school, at Pope John XXIII, she was diagnosed with a disease called Primary Pulmonary Hypertension (PPH). She explains it as the blood vessels in her pulmonary artery thickened and constricted blood flow so she wasn’t getting enough oxygen in her lungs. When she was diagnosed, she was told she had a year to live.

Now, as Donate Life Month comes to a close, she is forever thankful for the heart and double lung transplant she received 30 years ago.

“My heart was working hard, but the blood was not being oxygenated,” she explained. “I always talk about a grape and how full it is. My lungs were like raisins, shriveled. Basically, I couldn’t breathe, I was tired, I was placed on oxygen, and as the disease progressed, my lips were blue, I was in a wheel chair because I didn't have the energy to walk.”

The school and community stood behind Ognibene.

“They were phenomenal at the school in making me feel welcome,” she said, “The students in both Pope John and Sparta High did fundraisers, and Pope John worked with my illness while providing an excellent education for me. In fact, the entire town of Sparta was so supportive of me and raised the necessary funds so I could get the surgery. This is before health insurance would recognize that the surgery was NOT experimental.”

That was back in the mid-1980s, and at the time, the only cure for this condition was a heart and double lung transplant, and there were only a few hospitals that did this surgery.

“We opted to get my surgery done at University of Pittsburgh Medical Center (UPMC),“ Ognibene said. “Six months after I received my transplant, my surgeons performed the first successful double-lung transplant at UPMC, which I believe is now the norm for my condition. From my understanding today, depending on the stage of the disease will determine the type of treatment.”

Ognibene and her family learned that PPH is hereditary. Her father passed away in 1975, and the underlining cause was PPH.

“My two sisters were also diagnosed, Jean in 1995, and Mary in 2001,” Ognibene said. “They both took a drug called flolan to help open the blood vessels, and they were waiting for transplants. Unfortunately, they died waiting, which is very common.”

She surpassed that one year and received her transplant on March 30, 1988.

Growing up, Ognibene played soccer and was a competition dancer and a cheerleader.

“Let me tell you, dancers are athletes,” she said. “Due to my rigorous dance training, I am alive today because it regressed the disease. I remember my doctor saying to my mother and I in the examination room at UPMC, 'Have you ever heard dance until you drop? Well, you would have dropped literally.'”

She had the heart and double lung transplant and as dancers keep on moving across the floor, Ognibene kept on moving forward.

Now, 30 years later, she's alive and embraces everything about life.

“For my 30th, I didn’t have a big party as I have done in the past,” Ognibene said. “I spent it with friends from the NJ Sharing Network and with my husband, Bill.I enjoyed the 'normalcy' of the day which is exactly how I always wanted my life to be — to surround myself with people that I love.”

She also helped hang blue and green ribbons around Sparta with the NJ Sharing Network. On April 30, Ognibene celebrated her birthday, and one month before, March 30th marked 30 years since she had her transplants.

Ognibene said she is excited to be heading to the Transplant Olympics in Salt Lake City in August.

“I will be playing tennis and pickleball,” she said. “I am happy to part of the Sparta Athletic Club (SAC) where Charlene Beebe trains me in fitness. She understands my limitations and works with me so that I can be my best, even when I am not at my best. I also attend group tennis instruction with Ann Bain at the club. At the Lake Mohawk Tennis Club, the pickelball group always gives me pointers. It’s truly a fun sport, and I even received a pickelball paddle at Christmas. Any level is welcome, and I am so glad that Catherine Roy introduced me to the sport and welcomed me.”

Ognibene said, “Another part of staying healthy is really listening to my body, and sometimes that is hard to do. We just moved on Lake Mohawk, and my husband bought me a kayak so I can take my dog Lila with me. Last year was so much fun. I can’t wait for the weather to be a little warmer and take the kayak back out. I also garden. I can’t wait to plant my organic vegetables. It’s so rewarding.”

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