"Now we are entering the days when it is an adult disease," said Dr. Ahmet Uluer, director of the adult cystic fibrosis program at Brigham and Women's Hospital and Children's Hospital in Boston where Brian Sercus was treated.
"The burden is that it's a chronic illness and adult hospitals are just not geared like the pediatric hospitals, to taking care of these patients," he said. "But they are changing."
Of the 600 CF patients at Brigham and Women's, 300 are older than 18. "It's definitely a population that needs a lot of services," said Uluer. "It's a daily challenge."
Patients with multi-organ problems "can't be dealt with in 10 minutes," according to Uluer. Their medical visits can last up to three hours and hospitalizations can last days to weeks and months.
Beth Sercus praised the medical care at Brigham and Women's as "top notch" and said her son had become close to his medical team when he was treated in 2009.
But, she said, long hospital stays can "wreak havoc" on both patients and their families.
"Everyone still has to pay bills, and work," she said. "If your family wants to stay close, many times the expense of hotels, even the ones that provide discounts to families, can make it difficult."
When Brian's health began to decline, his employer offered to let him work remotely, but that was impossible, according to Sercus.
"The problem was that when he was hospitalized, the wireless network was not private, so he was not able to work," she said. "Same for me. I would bring my laptop, but was unable to work."
Parking, too, was an issue, and Sercus said a hospital-provided service might have helped. "How many times did I have to get his car out of impound because of the crappy parking situations? ... Or how much money did he spend to get his car out of the hospital parking lots when he did drive himself?"
Boredom was also a problem. "TV just doesn't cut it," said Sercus. "You are left there to sit and vegetate. This does not help to maintain a positive attitude."
In 2009, Brian had a particularly virulent bacterial infection that is contagious, so he had to be isolated from other patients in a private room for many weeks. Such infections are typical among CF patients.
"We tried and failed to hook up his PS3 and XBox, but the portable ones would have been a lifesaver," she said.
When the patients is not in isolation, Sercus suggested that larger rooms for long-term CF patients would make it easier for family and friends to visit. Or hospitals might provide bedding for visitors to spend the night.
Last April, in honor of what would have been her son's 31st birthday, Sercus raised $2,500 for the adult CF program. The hospital has earmarked it for a daily "special meal" of a patient's choosing. One of Brian's biggest complaints was hospital food.
Uluer admits, "CF is very isolating." But he said Beth and Brian Sercus did leave an impact.
Now, three years later, patients have unlimited supplies of food -- so important for weight gain, which is a challenge for adults with CF. The hospital reimburses families for some of their parking costs.
Patients are now supplied with computers if they don't arrive with laptops. Those who have Play Stations and X Boxes can hook them up in their rooms.
"We definitely want them to play games when they get out of bed and be more physical," said Uluer.
Brigham and Women's program is also hosting an educational event June 17 and those patients who are confined to their rooms can watch it and participate in the discussion via Ustream on iTunes.
But often it is the psychological, not the physical things, that matter most.
"Brian's friends are what kept him alive," said Uluer. "They would send him things like a birthday singing gorilla to his room."
Brian had a strong and vibrant personality – and faced his disease head-on. When he got angry, he would chastise his bacteria out loud, said Uluer. "He had a spirit about him that made it that made it very easy to care for him, he wasn't defined by his CF."
As for Komin, she wants to use her second shot at life to help others.
Komin will get a master's degree this fall in public health, hoping to serve as a liaison to help doctors better understand patients' needs.
Her lung transplant has left her with stenosis, which makes her respiration "like breathing through a soda straw."
"I can't run a marathon, but I don't like to do that anyway," she said. "But I can plan my life now. I couldn't before."
To learn more about cystic fibrosis and opportunities to donate, go to Children's Hospital Trust at Children's/Brigham in Boston or call Tara Hardimon at 857-218-5082. Specify "Brian's Circus," benefiting the adult cystic fibrosis program.