Piper makes music with her donor's lungs
Ellen Huet
Published 9:03 pm, Friday, March 15, 2013
- Double-lung transplant recipient Isabel Stenzel rehearses for San Francisco's St. Patrick's Day parade. Photo: James Tensuan, The Chronicle
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When Isabel Stenzel wails away on her bagpipes, playing "The Wearing of the Green" and marching in Saturday's St. Patrick's Day parade in San Francisco, she'll be relying on her own fingers, her own legs and someone else's lungs.
The 41-year-old social worker from Redwood City emerged from a double-lung transplant operation in 2004 able to breathe normally - and, with some practice, huff heartily into a bagpipe - after a lifetime with cystic fibrosis. The genetic, chronic disease builds up heavy mucus in lungs and makes breathing almost impossible.
"I was so sick before," Stenzel said. "I couldn't even walk without being short of breath. At the end, I couldn't even brush my teeth without being short of breath. And here I am marching, da-da-da, playing 'Scotland the Brave' in full uniform. I'm like, 'What?' It's more than a dream."
Playing wasn't even a pipe dream in the months following Stenzel's transplant at Stanford Hospital. She had to blow into a device to help reinflate the donated lungs after they shrank slightly in transit, then slowly built up her breathing capacity by jogging and swimming.
Bagpipe fever struck, however, at a donor-recipient event in Hayward a few months after her transplant, when a bagpipe troupe played. Stenzel's husband is Irish, and her father-in-law always talked about having bagpipes at his funeral.
Honoring donor
Stenzel had never played the pipes, but "when they came on stage, I was like, 'Wow. I want to do that,' " she said. "The sound is so powerful. It wouldn't be my sound, but it would be my donor's voice, my donor's sound that would be heard by the world. What a beautiful way to honor his gift of lungs."
She began taking lessons near her job in San Jose and joined the Stewart Tartan Pipes and Drums in 2007, practicing weekly at a church in Saratoga and drilling marching formations in the parking lot.
Stenzel has devoted her life to organ donation advocacy. She and her twin sister, Anabel, were both born with cystic fibrosis - her sister has received two double-lung transplants - and they wrote a memoir about living with the disease that inspired a documentary film in 2011. They're both active in helping others in the Bay Area with cystic fibrosis, and Stenzel has gotten to know the family of her donor, an 18-year-old Fresno man who died in a car crash.
But when Isabel Stenzel puts on her wool tartan plaid kilt, doublet, cape, spats and ostrich-feather bonnet Saturday to march up Market Street, she'll take off her advocacy hat.
Just like anyone else
"What I love is that my identity my entire life has been dominated by my illness, and I've always been the CF patient, the sick girl, the transplant recipient," she said. "In my piping band, I'm just another piper."
Bagpipes require deep lung capacity, enough to fill the bag with air, which then leaves through three drone pipes that always play the same note and one chanter that plays a melody.
Stenzel, like other beginners, started playing with all three drones plugged to lessen the airflow demand. She had played piano and violin as a child but never a wind instrument, and had no idea how to direct her air. As she played more and conditioned her lungs enough to unplug all three drones, her breathing capacity grew from 95 percent of normal to 125 percent, she said.
"It amazes me that I have the lung power to march and play," Stenzel said. "In one of my earlier parades, I had this very surreal and out-of-body experience. I felt like I was living a different life. I was in a different body, and in a way I am."
This new life, while sweet, could also stop at any point, Stenzel knows. Lung recipients face a risky future even after a successful transplant, with odds slightly higher than 50 percent that they will survive more than five years after the operation.
Twin's second transplant
Stenzel's twin had a double-lung transplant in 2000 and another in 2007 after her body rejected the first set. Stenzel's lungs are vulnerable to infections, and while high airflow from playing the pipes can help, she also has to be vigilant about mold that can grow in the instrument.
She can't swap her pipes with other players, who pass them around at shows and festivals "like a cup of whiskey," she said. And even if she's careful, transplanted lungs can slowly lose function over time.
"Rejection is always a possibility," she said. "I even get very tearful thinking about how someday, I'm not going to be able to play the pipes. I guess that's the case for every human being - all of us have to give up something we love as we age. For me, it's much more imminent."
But while she's still able to play, she said, it's "life-affirming," for herself and for her donor's family. "I feel so alive."
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