People living with Cystic Fibrosis given hope through community
Paul Underhill has lived with what feels like a “bad chest cold” for all of his life.
From the time he was six months old, laboured breathing, low energy and coughing up blood was just part of life for Underhill. Just as usual was saying goodbye to friends he met in special camps he attended as a youth — today, only five of the 30 close friends Underhill met are still alive. By the time he was 41, Underhill was an exception to the rule, and he was undergoing a double-lung transplant that would extend his life.
Underhill is one of about 70,000 people worldwide with Cystic Fibrosis — a genetic condition that can affect the entire body but primarily the lungs and, in lay terms, “causes extra sticky mucus.” While the disease affects each person with varying degrees of severity, children are most commonly met with difficulty breathing, respiratory tract problems, chronic lung infections, failure to grow and an inability to digest food. Years ago, few were expected to make it to adulthood. Yet people like Underhill have given a face to how full life with CF can be.
To celebrate the community and Cystic Fibrosis Awareness Month, the Victoria chapter of Cystic Fibrosis Canada is hosting its ninth-annual “Great Strides” walk at Royal Roads University on May 26. More than 100 people living with and without CF join together to walk the relaxing grounds of the university, then partake in a barbecue and family activities.
Heather Strange is one mom who will be there in support of her son, Carter, who has been living with CF for all of his eight years.
“We knew from day one that something wasn’t right with Carter, but the doctors just kept testing him and treating him, and no one knew for what,” says Strange. “Finally, in our countless trips to the doctor, one finally clued in and sent us to the CF clinic. … It wasn’t ‘finally’ getting the diagnosis that helped us do anything — it was just that we had a title now; something to call what was happening to our son.”
Life for Carter, and for many with CF, can morph into “medicine boards” — something Strange came up with — to list all the daily prescriptions, as well as constant hospital trips, daily routines of physical and inhalation therapy and special high-calorie diets to support the body.
As Underhill experienced, for many years, most people with cystic fibrosis lead normal lives. He went to school, pursued his career, got married and enjoyed an active social life. He even became the founder of Rumble beverage, a lactose-free protein drink designed to offer high, organic nutrition that launched in Victoria last fall. However, eventually the lungs catch up.
“It was hard to watch my friends from CF camp disappear one by one, but when you are young, you have this idea that you are ‘special’ and none of this really affects you — your CF is different,” he says. “Then, when I hit my 30s, I started to realize maybe I wasn’t so special.”
Underhill was hospitalized in critical condition in 2011, but his case was rare: after only a brief wait on a long weekend, lungs arrived and the complicated transplant procedure was a success. Underhill says he knows people who have waited more than nine weeks in hospital, sometimes just to see no lungs arrive. And though transplanted lungs in these situations are only expected to last for close to five years, Underhill has had a reprieve from the violent side effects of his CF.
“It’s a weird moment to realize that to get those lungs, someone has to lose them,” says Strange. “Our greatest hope is someone else’s greatest loss.”
There is no known cure for cystic fibrosis. However, walks like Great Strides do a lot to foster understanding about the disease, as well as bring together members of the supportive community.
“So often you don’t want to park in the handicapped parking spots because you get out of your car and people think there’s nothing wrong with you,” says Underhill. “What they don’t know, is that in a few minutes I’m probably going to be leaning on that shopping cart that will be too hard to push.”
Strange says she and her husband have “grieved the life they thought they would have.” Now, even planning week-by-week (as opposed to day-by-day) is an achievement.
“We see other parents talk about where there kids are going to go to university, and what sports they’ll play, and we just have to smile and nod, because we don’t know if Carter is going to be able to do any of that,” she says. “But knowing people like Paul does give us hope.”
Underhill, says it’s important to put the whole disease in perspective.
“I know people who I went to school with who died at 20 due to ovarian cancer, or 25 in an automobile accident — if people looked at me and said, ‘Poor Paul,’ it didn’t phase me,” he says. “I’ve been blessed to live a relatively normal life. It’s just about persevering and living every day the way you want to live.” M
Join Great Strides: Taking Steps to Cure Cystic Fibrosis Sun., May 26. Registration 9am, walk 10am at Royal Roads University (2005 Sooke). For more information, contact 250-595-8874 or cysticfibrosisvictoria.ca.