Doctors told Peter Nicosia, 81, who was suffering from pulmonary fibrosis, he was too old for lung replacement. That was in 2009 at the age of 78.
Tampa-area lung transplant patients, past and future, celebrate life
Christina Mabe, lead nurse in the T.G.H. Lung Transplant Unit, gives a hug to transplant recipient Derek Goody and his wife Rose Marie as Mabe sells raffle tickets at the annual One Breath at a Time Lung Transplant Support Group holiday party. The event helps to raise money for the Butterfly House, a place where patients and their families can stay while undergoing the months long procedure.
By | Tbo.com"
By | Tbo.com"
Doctors told Peter Nicosia, who was suffering from pulmonary fibrosis, he was too old for lung replacement.
That was in 2009.
Sunday, the 81-year-old joined fellow lung-transplant survivors and others waiting for transplants in The Regent ballroom for the ninth One Breath at a Time Holiday Party, which drew about 250 people.
"Something like this is very encouraging, very strengthening," said Nicosia, of Most Holy Redeemer Catholic Church in Tampa. "You also feel that you're not by yourself. You realize that you're not on an island independent of others.
"You exchange ideas, learn from others, what they do during their time of suffering. The suffering is not only physical, it's psychological and emotional."
This was Nicosia's fourth party.
Sunday night was one of several fundraisers the nonprofit One Breath at a Time organization hosts throughout the year. The goal is to fund its Butterfly House, a two-story home just off the Hillsborough River in Tampa, renovated to serve three patients and some family members before, during and after transplants. The house allows people to stay within a seven-minute drive to Tampa General Hospital during treatment, rent-free.
Mark Rolfe and his medical staff deep-fried six turkeys, while guests provided the side dishes. Later, items ranging from wine to an iPod speaker system were auctioned off.
"It's great to see the people," Rolfe said. "We see them when they're sick. [At the party], we see them with their families and dressed up. They're not patients. They're more friends. It's nice because they get to interact with each other."
Robyn Dekeyser, now 43, was diagnosed with cystic fibrosis just 21 days after being born. She said it never hindered her everyday life, just fast-tracked things. She's an accomplished ballet performer and for 10 years was an administrative assistant at the U.S. Attorney's Office in Tampa.
On July 23, 2012, Dekeyser underwent a double lung transplant.
Now, she doesn't worry about breathing anymore.
"It's an involuntary thing that you do, but for [cystic fibrosis] patients waiting for a double lung transplant, it's not so voluntary," said Dekeyser, who was attending her first party. "Every breath is labored and very executed. To not have to worry about that is amazing."
The annual party allows the doctors and patients to move beyond numbers, said Tarik Haddad, a doctor who began working with Rolfe four years ago.
"A lot of times, that personal touch in medicine is lost," Haddad said. "You're just a patient, a number. This brings it to now you're a family. Patients can share stories of been there and done that."
When potential transplant patients see those who have already experienced the process and are on their way to a new sense of normalcy, it makes the journey easier, Haddad said.
"It's a rewarding experience for the fact that we can take our patients who have been through the process of a transplant and get them to meet patients who are just starting that process," Haddad said. "A lot of times the patients are facing the daunting thought of transplant and breathing with someone else's lungs; it's a huge surgical procedure, and it's a scary task."