Primary Sclerosing Cholangitis
To look at Alison Cubbellotti now, you would never know all that she and her family have been through. A healthy 25-year-old from Trumbull, Connecticut, only five years ago she was near death.
Alison had been suffering for most of her life with primary sclerosing cholangitis (PSC), a chronic disease that slowly damages the bile ducts. In patients with PSC, the bile ducts become blocked due to inflammation and scarring, which causes bile to accumulate in the liver, where it gradually damages liver cells and causes cirrhosis. As cirrhosis progresses, the liver loses its ability to function.
That’s exactly what happened to Alison. She was only nine-years-old when she was diagnosed with PSC and Crohn’s disease and battled both diseases throughout her childhood.
By the time Alison was a junior in high school, the PSC was severely attacking her liver and she would be hospitalized more times than she could count. With determination and perseverance, Alison attempted to start college at Sacred Heart University numerous times but, among other symptoms, she had several incidences of build up of fluid in her lungs and was experiencing liver failure. While the medical team was able to stabilize her repeatedly, by her sophomore year she had trouble remembering things due to dangerous levels of ammonia in her blood and she withdrew from school. She was also put on the liver transplant list.
“That was really hard,” says Alison. “I had dreams of becoming an RN and now I wasn’t even going to be able to graduate from college.”
Family members and friends were tested to see if they could donate a portion of their livers but only her brother was a match. The rollercoaster continued for the family when surgeons aborted the transplant surgery, already in progress, when it was revealed that her brother Stephen would have been in danger due to the location of an artery near his liver. The family was devastated, especially Stephen.
In desperation, Alison’s parents sent a final plea for help to everyone they knew including the Sacred Heart University email network. That message reached 21-year-old John Vales, a business administration major.
With absolutely no connection to Alison, other than attending the same college, John selflessly donated a piece of his liver to her. “The mother’s plea really got to me. All I could think about was that if this were my little sister, I would hope that someone would do the same,” says John. “I was just doing the right thing.”
At this point, Alison was bedridden with fluid in her abdomen and lungs, she could not eat and was in constant pain. Doctors said that she had two months to live.
On October 19th, 2009, Alison began her new life when her transplant was successfully performed at Yale-New Haven Hospital. Further complications ensued. Alison needed three additional surgeries to ensure her health and that of her new liver. Today, she is healthy.
“Thank you just isn’t enough to say to someone who has saved your life,” says Alison. And she wasn’t even able to do that initially as John had requested to be anonymous. However, the day John was being discharged, he asked to meet Alison. “It was like something out of a movie. I could see the man who saved my life outside my room and I became absolutely speechless. All we both could do was cry and hold hands; our parents did the same.”
Now Alison and John and their families are extremely close.
Many people don’t realize that liver transplants can come from living donors. But with more than 17,000 Americans waiting for donated livers to become available, living donor liver transplants have become a viable option for people suffering from end-stage liver disease.
As for Alison, she is in the hospital every day. But this time she isn’t the patient. On July 3rd, 2014, the day before her birthday, she officially became an RN giving to others what her doctors and nurses gave to her:. Health, hope and happiness.
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