Making percussion instruments out of pill bottles, and other stories of living with cystic fibrosis

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    Philadelphia musician and recording store owner Brian McTear talks about ‘chasing life expectancy’ with cystic fibrosis.

    Brian McTear is a Philadelphia musician and recording studio owner who runs a music non-profit called Weathervane Music.

    “It’s cool, it’s totally awesome,” said McTear, sitting at his vintage 1974 MCI console which used to be owned by Sigma Sound in New York.

    McTear has cystic fibrosis, CF, a genetic chronic disease that affects the lungs and digestive system. A defective gene causes the body to produce thick, sticky mucus that clogs the lungs and stops enzymes from helping the body break down food.

    “People with CF are constantly battling lung infection, and for many, it is the battle that they lose,” said McTear.

    He has to inhale a mixture of medications every morning and evening, to bring mucus up and out of his lungs. He takes digestive enzymes, and he is also pre-diabetic with a kind of diabetes that comes with cystic fibrosis.

    “I take a huge list of medication, 20 or 30 different things I take, it’s insane.” McTear has found a way to reuse his empty medication containers in his studio.

    “I wanted to make different shakers out of my pill bottles, so I aspire to make a whole set of shakers based on my medications, something no other studio in the world has.” McTear lifts the pill bottle, which is filled with quinoa, and gives it a shake. “Sounds great,” he said.

    ‘Chasing life expectancy’

    McTear was diagnosed with cystic fibrosis when he was 2-and-a-half years old, so he doesn’t recall a time when he didn’t know that he had CF. During his childhood, cystic fibrosis didn’t have a negative connotation.

    “I was very healthy, I got a day off from school every two months to go to Children’s Hospital, I’d get high fives, all around, people would tell me that I’m doing great.” McTear says he was in his 30s before he got angry at having this condition.

    “I got really sick when I was 36, my lungs felt like they were shutting down, and I felt the limitation on my life.”

    McTear was diagnosed with a mycobacterial infection, and had to take very strong antibiotics for over a year.

    In some ways, McTear has been living in the shadow of death.

    “When I was diagnosed at 2-and-a-half – life expectancy was four to six,” he explained. “When I turned six, it was eight, when I turned eight, it was 12, when I was 12, about 20, when I turned 37, it was 37,” he added. “Then I turned 38, and I thought, ‘Well, I am kind of past due,’ and then they just upped it to 40. So I have been chasing life expectancy, but what that means is the treatment of cystic fibrosis is a runaway success, and the Cystic Fibrosis Foundation is the most admirable foundation in the world. A kid born with CF today will have a really good chance of it being a nuisance, and very treatable.”

    McTear says all of his life, he has been somewhat “famous” for having CF. His teachers in Kindergarten knew, and word got out to the other kids, and their families. “All through grade school on a cycle of two years, these rumors would start … ‘Brian McTear is really sick, and he is going to die,'” said McTear.

    A great relief

    McTear is now 41 years old. He recently asked his doctor about the possibility of organ transplants as his disease progresses.

    “My doctor said, ‘talk to me in 15 or 20 years,'” recalled McTear. “I said that’s a long time, I might not be here, and he looked at me and said – ‘you will definitely be here in 20 years.'”

    McTear said he felt great relief.

    “You have no idea how much of a weight off my shoulders that was. I will never forget the drive home from that appointment and for the first time in my life, imagining myself being 55 or 60 years old.”

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