CF Patient, Recovering from Double Transplant, Inspires ‘Lunges4Lungs’ Fundraiser
The lunges keep coming for Lunges4Lungs, even as Mallory Smith recovers from the double lung transplant she has received to help extend her life.
Friends of Smith started the transplant fundraising campaign, which involves people making donations for each of the leg-muscle exercises known as lunges that they perform. Although doctors have performed her transplant, the lunges for the Cystic Fibrosis Foundation‘s new transplant initiative continue.
Smith is in many ways a typical young woman. She’s a 24-year-old recent college graduate from Los Angeles. She enjoys outdoor activities and spending time with family, friends and her boyfriend. But she has cystic fibrosis.
CF has never defined her, according to a childhood friend, Bo Abrams. “She’s an incredible athlete,” he said. Smith was a standout on her high school volleyball team and also played water polo.
But much of her life has been spent fighting a disease she was diagnosed with at age 3. That fight may get a little easier, at least for now. Smith got her long-awaited lung transplant on Sept. 11 at University of Pittsburgh Medical Center (UPMC). She came through the operation well and is now breathing on her own, although she’s had post-surgical pain.
“Everything went great with the operation,” Dr. Jonathan D’Cunha, chief of lung transplantation at UPMC, said in an email. “She has a great set of lungs and is meeting all her milestones in the recovery process. It’s still very early in the recovery process, but she is doing really well.”
Abrams and Michelle Wolff, another close friend of Smith, started Lunges4Lungs on Facebook as a way for people to honor her and all others who live with CF. The premise is simple. Do a lunge, donate. “We suggest 10 lunges @ $1 per lunge,” reads the Facebook page Lunges4Lungs.
“Michelle came up with the actual idea for Lunges4Lungs,” Abrams said. In its first month, the challenge has raised $47,000 for the Cystic Fibrosis Foundation’s transplant initiative.
On the Facebook page are photos and videos of people doing lunges in gyms, in parks, on the beach, on a mountaintop, in a living room, even on a standup paddleboard. Some lungers are holding their pets. One couple lunged their way around Paris. Another couple lunged their way up a long set of outdoor stairs. Employees at Lululemon in Pittsburgh lunged their way through the store.
Smith is a Stanford graduate who has a degree in biology with a focus on environmental anthropology. Since college, she’s been blogging about her experience with CF, which affects some 30,000 children and adults in the United States.
She is an inspiration to other young adults, Abrams said. “She’s incredibly smart and talented. She embodies someone who lives her life to the fullest.”
He and Wolff hope Lunges4Lungs spreads the word about what CF patients live with every day: a struggle to breathe.
The Cystic Fibrosis Foundation says a defective CF gene causes mucus to clog the lungs and airways. Bacteria is trapped, leading to infections. But CF doesn’t stop with the lungs. In the pancreas, mucus also prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.
This defect makes Smith cough a lot, and she has spent much of her life fighting infections. When she was born in 1992, Abrams said life expectancy for patients with CF was age 22. Now, many survive into their 40s and beyond. Medicine and transplants have helped achieve that.
For many years, Smith has taken medicines that help her breathe and fight off infections. She wrote on her blog in July that she was taking 41 medications daily. She also needed an oxygen concentrator, home health services, and antibiotics administered through an IV.
Earlier this year, Smith and her mother, Diane, moved to Pittsburgh to await the lung transplant. After several false alarms, she finally got the call.
Lung transplants aren’t without risk. “This is why transplant research is so important,” Abrams said. But for Smith, at the moment, it’s so far, so good.
D’Cunha discussed lung transplants for patients with CF in his email. “A double-lung transplant is for those with end-stage lung disease who cannot perform normal activities and whose lung function is really deteriorating,” he said. “We take out diseased lungs, give them viable donor lungs, and a new lease on life. The operation typically involves a six- to 12-hour operation. Recovery usually includes two to three weeks in the hospital, and a patient’s quality of life is much improved one to two months after post-transplant.
“Patients with cystic fibrosis aren’t necessarily the most likely patients to need a lung transplant,” D’Cunha added. “These patients predictably have lung disease because of the genetic defect involved, and it progresses over time to the point of needing a transplant.”
One of the biggest risks transplant recipients face is organ rejection. This usually happens in the first six months, and can occur suddenly or gradually. Patients may need to return to the hospital to treat rejection.
Infections are another major risk. Immunosuppressant drugs help the body accept the new lungs, but also weaken the immune system.
Even after a lung transplant, patients will still have CF in their pancreas and other organs. Treatments might still be needed to digest food, to help the body absorb nutrients, and to prevent liver disease.
Research has helped improve surgical techniques, as have immunosuppressive drugs, post-transplant care and the methods used to preserve the lungs during the transplant procedure.
Eighty percent of CF patients who receive a transplant are still alive a year later, and 50 percent are alive five years later.
UPMC has done more than 2,000 lung transplants, the most of any hospital in the United States. Around 30 to 40 percent of its transplant patients were turned down by other medical institutions, “making us the go-to center for the ‘sickest of the sick,’” D’Cunha said in his email.
Abrams and Wollf hope to raise $65,000 for CF research. That’s after “65 roses,” the term a little boy blurted out back in 1965 when he was diagnosed with the disease.
“This is personal,” Abrams said. “We need to get to the next level, but we need to stay positive.”
You don’t have to be athletic to do Lunges4Lungs. Do one lunge, he suggested. Or ask others to take part. The purpose is to spread the word.
Smith’s own words, in a letter she wrote to herself, say it best:
“But for now, you must live — not simply exist, but live. You must do so by deliberately choosing the light of intention, gratitude, vitality, and curiosity over darkness. You owe it to the little girl who dreamed of researching dolphins in Belize, who devoured books with a hunger, eager for a glimpse outside her sheltered world. And you owe it to the woman you will become, one day, with new lungs and a second chance.”