OPPENHEIM — Jessica Ouellette is breathing easier today than she has in years.
A year ago, she was slowly losing her fight against cystic fibrosis, a disease in which a person’s lungs fill with fluid. She was so ill that doctors told her mother that Jessica had less than a year to live. The 17-year-old’s only hope was a rare surgical procedure in which both her lungs are removed and replaced with sections of lungs from live donors.
So six months ago, she had the operation, becoming one of about 55 people in the United States to undergo a living-donor lung transplant. The replacement lungs were donated by her mother, Stella, and uncle Mark Souza. “I can breathe so much better now. Life is different,” Jessica says.
Doctors can prescribe antibiotics and aerosols to open the air passages for people with cystic fibrosis, but the disease is not yet curable and is generally fatal in childhood. Jessica was diagnosed with cystic fibrosis at 9 weeks old. By the time she was 17, with only 20 percent lung capacity, the symptoms were more than she could bear. Her lungs were constantly overwhelmed by a buildup of fluid. She could barely sleep. Her body was using so much energy trying to bring in oxygen that she needed supplemental nutrition. Before the operation, Jessica was on oxygen, intravenous medications and had undergone endocrine, gastrointestinal and respiratory therapies. Although she was on a waiting list for donor lungs, her condition became too critical to wait. Doctors told the Ouellettes the best option would be to find living donors who would give her part of their lungs.
Faced with few choices, the Ouellettes had to make a decision. “They said she had six months,” said Stella Ouellette, “and at that point, we knew that she had had a significant decline, but we didn’t really want to accept the fact that it was quite that serious. “We didn’t have many alternatives,” said Ouellette, 45. “The problem was, how many small-framed people her age would [wind up] organ donors, and could we afford to wait? And they said, ‘No, you cannot wait.'” Doctors at Massachusetts General Hospital, where Jessica had been receiving treatment for cystic fibrosis, suggested the Ouellettes find living donors who may be compatible to give up some of their lungs.
Her mother and uncle volunteered, becoming part of a small group of people who have donated lobes of their lungs while they are alive. To make sure they were compatible, Stella Ouellette and Souza underwent batteries of tests. In addition to CAT scans, chest X-rays, ultrasounds and psychological reviews, Souza said doctors sent a camera down their throats and took 14 vials of blood during three trips to Massachusetts before the operation.
The family members matched up and were compatible, so doctors went through with the operation. The procedure took half a day, said Dr. Susan Zorb, transplant coordinator at Massachusetts General Hospital. “It takes three complete surgical teams and operating rooms, one for each donor and one for the recipient,” said Zorb. “The operation for the recipient can take anywhere from eight to 14 hours, depending on how things progress. The donor surgery usually takes about three hours.” Not long before the surgery, Jessica said, she realized she was about to place her life in the hands of more than a dozen surgeons and medical staff who were to remove both of her ailing lungs and replace them. She said the reality of it all hit her the night before the operation. “I was scared,” she said. “The night before the surgery is when I broke down. I realized what was going on and I cried for like three hours.”
On April 7, the transplant team at Massachusetts General performed their fifth successful living-donor transplant. The operation had a profound effect not only on Jessica, but also on the two donors, they said. Souza, 33, now has a crescent-shaped 14-inch scar on his back, running from the lower part of his shoulder to the bottom of his shoulder blade. It is where surgeons made an incision, cut one rib, removed a piece of another, opened him up and deflated his right lung. They then tied off one lobe, snipped it off and brought it into another room, where Jessica lay on life-support equipment with both of her lungs gone. Once they tied off Souza’s right lung, they inserted a chest tube and re-inflated it. Meanwhile, while one team was closing him up, doctors were doing the same thing to Stella Ouellette. She gave up one lobe of her left lung.
As they look back, Stella and Mark say it was a little more than they expected. “I thought it was going to be a lot easier,” said Stella. “I think it was hard as a mother because, number one, I had major surgery, but I wanted to be right near [Jessica], by her side, and then between my brother and I, we were both concerned with each other.” Stella and Souza were given a spinal anesthetic that numbed the pain of the operation for a day or two, but that wore off. “We had an epidural, which kind of numbs the area for the first couple of days,” said Stella. “We were smiling and reveling in the good luck of the surgery and everything going well. Then, all of a sudden, they took that tube out of our spine, and oh, that hurt a lot.” The pain followed the donors home. “There was a lot more pain involved than I think we realized,” said Souza. “I can still feel it … I slept on an EZ Boy for about a month [after the operation] because I couldn’t lay down.” Zorb said the pain was probably more intense for the donors. “Jessica probably had less pain in the beginning, since she was kept very well sedated for many days,” Zorb said. “Eventually, she was allowed to wake up and would begin to be somewhat uncomfortable. She would receive pain medication, but there is always some discomfort associated with major surgery.”
Today, Jessica is feeling much better. She can live and breathe normally. She even takes a jog once and a while — something she never was able to do before, she said. Looking back, the family said it could not have gotten through the ordeal without the support of their community. The operation cost about $250,000, most of which was covered by insurance, Stella Ouellette said. “I have Blue Cross-Blue Shield of Utica-Watertown,” she said. “They were very forthcoming in helping us with getting claims through.” Medications for Jessica run around $25,000 per year, some of which were not covered. “There was close to $4,000 worth of medicine that wasn’t covered,” her mother said. Other costs also had to be picked up by the Ouellettes. Numerous trips to Boston, hotel expenses, meals and other incidental costs were more than the Ouellettes could afford, but their community came through with help. Local businesses and organizations raised more than $10,000 in charitable donations toward the Ouellettes’ cause, a favor the family says they never will forget. “It’s very humbling knowing that we were in the thoughts and prayers of so many people,” said Stella Ouellette.
Mark Souza’s co-workers at the Marcy Correctional Facility offered him their vacation time so he could recover after the procedure. “I had enough time to cover my time being off, but they came up and told me if you have to have more time off, a lot of officers wanted to donate time to me so I could take more time off if I had to,” said Souza. “That’s probably one of the biggest things about this whole thing. It’s what everybody has done. It’s not what me and my sister have done for Jessy, it’s what everybody else has done for everybody.”
Although she is breathing easier, Jessica is still on the road to recovery. On Nov. 3, she was admitted back into Massachusetts General Hospital because she has come down with pneumonia. Since the April operation she has come through two spates of pneumonia. Doctors said medicines were not working as quickly as they did the last two times, so they wanted to monitor Jessica’s recovery. The medicines are steadily working now, Stella said on Saturday. She is getting better, and may come home on Wednesday. She goes for check-ups monthly to the hospital in Boston and takes anti-rejection medication. Her mother and uncle also go for check-ups. Jessica said she received support from many people in her school. Classmates at the Oppenheim-Ephratah Central School donned colored ribbons and decorated the school to wish Jessica luck before the operation, and many of her friends offered her support. “They’ve just been amazing,” said Jessica. Stella Ouellette said the experience changed her outlook on her neighborhood and community. “We were very private people before this happened,” she said. After hundreds of people offered help to get the family through the ordeal, she came to a realization. “It kind of reinforces your idea that people are basically giving and loving,” she said.