Thankful for life

By William Kenny
Times Staff Writer

People don’t get much more active than Madelyn Porretta was. Eight years ago, the wife and mother from Morrell Park was a 52-year-old dynamo.
She worked in a chiropractor’s office, coached cheerleading with her daughter Lynell at Archbishop Ryan High School and traveled with her husband Ron. She also spent plenty of time as the doting grandmother of her son Ronald’s first child, Ronald III.
Then everything changed on a trip to Myrtle Beach for a cheerleading competition.
"We were walking to this place, and I was huffing and puffing. That’s when my husband said, ‘It’s time to see a doctor,’" Porretta recalled recently.
In time, she learned that her shortness of breath was symptomatic of a serious lung disease that could ultimately prove fatal if left untreated.
Pulmonary fibrosis is, in effect, a hardening of the lungs, Porretta explained. Initially, it meant she had to use oxygen tanks to help her get the air she needed. Later on, she needed a wheelchair to get around.
Her condition continued to deteriorate until early last year, when she had no choice but to undergo a lung transplant.

• • •

It’s been just over a year since the procedure at the Hospital of the University of Pennsylvania, and Porretta is back doing many of the things that she gave up during the worst days of her illness.
She helps Lynell coach the Triple Threat All-Stars cheerleading club and has two additional grandchildren to chase around, including Ron’s daughter Miranda, 7, and Lynell’s toddler, Adriana Sophia, 15 months.
Porretta is working hard at something else, too. She’s planning a big thank you to HUP for giving her another chance to live.
On Sept. 22, Porretta will host a fund-raiser for the Transplant House, a residential facility that the hospital plans to build so that the families of its out-of-town transplant patients can be with their loved ones while undergoing treatment.
The benefit will feature a smorgasbord buffet, refreshments, musical entertainment, prize drawings and fun. It will be held at Polonia Hall, at 4431-37 Belgrade St. in Bridesburg, and start at 7:30 p.m.
"It’ll be like the Ronald McDonald House for adults," Porretta said of the planned patient residence.

• • •

Throughout her personal ordeal, Porretta learned firsthand of the difficulties encountered by other families who want to go to HUP for surgery. The hospital has performed about 500 organ transplants of all varieties, she said.
One patient, Bruce from Connecticut, stayed in a Holiday Inn, an expensive proposition considering it can take weeks to prepare a patient for a transplant and doctors can never be sure when a donor organ will become available. When one does, however, the patient must be able to get to surgery quickly.
Porretta also met a 38-year-old woman, also from Connecticut, who had cystic fibrosis and was a double-transplant patient.
"She and her husband rented an apartment, and he was out of work to be with her," Porretta said. "Insurance covers only part of it, and (many people) don’t have any family and friends around."
Porretta on the other hand had a wealth of support behind her, helping her endure plenty of particularly difficult periods.
Initially, doctors couldn’t figure out what exactly was causing her breathing trouble. Besides that, her pulse was in the 80s at rest. Her doctor at the time said that her weight was a problem. He also recommended that she start taking oxygen through a tube across her upper lip.
Porretta spent months going from one specialist to the next trying to get a firm diagnosis. In the meantime, her breathing got worse and worse, and her oxygen intake grew.
In 2002, she underwent a lung biopsy at HUP. She credits a pulmonologist there for finally putting a finger on her problem. In time, her prognosis became increasingly bleak, and the discussion about a transplant began.
"(The doctor) told me, when you get sick, you’re going to go like a rock," Porretta said.
Though she took medications, the oxygen tanks were getting to be her biggest problem.
"Whenever I went out, I had to take all of these tanks with me," she said. "And I’m a doer. I go, go, go all the time."
Porretta had oxygen delivered to her daughter’s November 2004 wedding.
"For the wedding, I had it all beaded to go with my gown," she said. "You have to do what you have to do."

• • •

When she learned that Lynell was expecting her first child, she had another issue to consider.
She wanted to be around for her granddaughter and was afraid that she might not make it through a transplant procedure, so she tried to put it off. But her chances for survival were worse if she didn’t go through with it.
"They told me, if you don’t have (surgery), you won’t be here," Porretta said.
The baby was born in May 2006. The hospital found a donor for her two months later.
"After the operation, I wasn’t allowed to hold (my granddaughter) for months. That was torture," Porretta said.
Yet, she was back on her feet the next day and in her own home eight days after the procedure. In the year since, she has cut down dramatically on her oxygen, and she baby-sits Adriana Sophia all the time.
The usually matter-of-fact Porretta still gets emotional when she contemplates the gift that she received. She’s written letters to the family of the unknown donor through the Gift of Life organization but received no reply.
"I can’t thank them enough," she said. "They gave me my life back. They lost somebody, so it’s real, real hard for them. But if they knew what they did for me, maybe it would help them with their loss." ••
For tickets and information to the Sept. 22 Transplant House fund-raiser, call 215-632-7679.
Reporter William Kenny can be reached at 215-354-3031 or bkenny@phillynews.com