Cama Piccini felt sorry for herself for two days after learning that she had cystic fibrosis, and then it was time to move forward.
“I sat at home, drank some wine, ate some cake, cried … then I put on my big girl pants and got out there and got to work!” she said.
Piccini was diagnosed with the terminal disease, which attacks the lungs and the pancreas, when she was in her early 30s. Now, almost 40, she has already exceeded the normal life expectancy. But she still has to deal with diminished lung capacity, daily breathing treatments, a strict exercise regimen and lots of visits to the doctor.
“I didn’t know much about the disease quite honestly, just what I had seen on TV and that’s all horrible,” Piccini said. “I know what I have. I can conquer it each day. I don’t let it define who I am.”
What is CF?
Relatively healthy as a child growing up in Columbus, Ohio, Piccini said she was plagued with symptoms similar to asthma and allergies. That was the only diagnosis her doctors could offer. That didn’t slow her down. She played softball and the French horn, which probably slowed the progression of the cystic fibrosis, because playing the horn is similar to her breathing treatments.
“It was actually a blessing to be diagnosed, because now I know what it is, and I can conquer it,” Piccini said.
According to the Cystic Fibrosis Foundation, a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. It obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
Medical advances have extended the life expectancy of children and adults with cystic fibrosis. In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, many people with the disease can now expect to live into their 30s, 40s and beyond, according to the foundation.
“Nationally, the life expectancy of someone born with CF is 39 years,” said Dr. Daniel Layish, who, with Dr. Francisco J. Calimano, directs the Central Florida Pulmonary Group Adult Cystic Fibrosis Center in Orlando. “Thirty-nine years is certainly much better than it was 20 years ago, when (children diagnosed with CF) didn’t live into adulthood. Still, it’s obviously a shorter life expectancy than most of us would want.”
Piccini is pancreatic sufficient, which means she is better able to fight off infections because she gets full nutrition, she said.
“She’s one of the fortunate 15 percent of CF patients that do not need pancreatic enzymes,” said Layish, Piccini’s physician.
Still, she must stick to a strict treatment and exercise schedule in order to stay healthy. A human resources manager for Harris Corporation’s headquarters in Melbourne, Piccini works from home every other day so that she can do all her treatments and get her exercise in.
“One thing that has impressed me about Cama, and other people living with CF, is their stamina — they don’t get a day off from CF,” Layish said.
Move on with life
Piccini had been married to her husband, Mark, for only two years when she got her diagnosis.
“My husband has been fantastic,” she said. “He never skipped a beat.”
“We are solution-based people,” Mark said. “If something goes wrong, we try to figure out a solution, move on with it, and not let it affect our lives 100 percent.”
At the time, they were living in Atlanta, where the polluted, stagnant air was a problem. They decided to move back to Florida. “The humidity is much better for me … it keeps things moving,” she said.
They settled in Baldwin Park, where Mark owns and operates a recruiting agency. Last year, they adopted an 8-month-old boy, Mason.
Piccini said she loves being a mother, and pushing Mason in his stroller along the trails in Baldwin Park has been a benefit in more ways than one.
“I feel healthier because I get out and walk every day,” she said. Piccini also does yoga and frequents the Salt Room, a respiratory treatment spa in Orlando.
Drinking for a cure
Piccini has attended every one of the Food & Wine Festivals at Baldwin Park, and has worked as a volunteer for many of them.
“That’s my type of event,” she said, “drinking for a cure!”
Rick Porter, development director for the CFF Orlando chapter, said he and Piccini have worked together to plan the Food & Wine Festival, which is Saturday, March 5.
“I routinely meet with adult CF patients but not all are as active with CFF as Cama,” Porter said. “Cama’s attitude toward life is truly amazing.”
Recently, Piccini was nominated to be an “honoree” for the CFF’s Greatest Night. She raised more than $5,000 for CFF research.
We’re all terminal!
Piccini said motivation is a problem for a lot of cystic fibrosis patients because of a focus on the disease as a terminal illness.
“When I was diagnosed, the clinic in Atlanta gave me this book on CF. It was the most gosh awful book. I was in tears!” she said. “It was death and dying and preparing your family … everything about being terminally ill. If you are taught that from a young age, are you going to see the point of going to college, of getting a job?”
“It could be worse. People say to me, ‘Well, you’re terminal.’ I say, ‘We’re all terminal!’”