A Cystic Fibrosis Coming-of-Age Story
While on a road trip to the Oregon coast with a friend, Greg Link III reflects on his past 19 years of life, and the cards he was dealt as someone born with cystic fibrosis (CF), a rare, lifelong disease that affects the lungs and digestive system.
“I would say, relatively, I’ve lived a pretty normal life compared to other CF kids,“ he recalls. Mentally, I never let it get in the way.”
As someone who busses tables at a restaurant and loves to play sports, from snowboarding to basketball, Greg’s life may not seem all that different to those who don’t know his story.
“I grew up way skinnier and shorter than everyone else,” Greg says. “I took breathing treatments twice a day, which weren’t comfortable or fun. And I have a talent of being able to swallow 20 to 25 pills every time I eat. It’s one big inconvenience, but you get used to it.”
Despite his challenges, Greg says he can still live normally and do a lot for his age. “Some people have a mild condition and others struggle daily to stay alive. I don’t want to downplay the seriousness of it. I just no longer let it define me.”
Greg attributes his positive outlook, in part, to his CF care family at Providence.
Local CF Care Designed to Last a Lifetime
Providence Cystic Fibrosis Pediatric and Adult Center on the Sacred Heart hospital campus includes a multidisciplinary team of providers, program directors and nurses, as well as a respiratory therapist, nutritionist, pharmacist, social worker and clinical research coordinator, who each play a critical role in providing highly-specialized and complex care for CF patients, like Greg, from
While the median life expectancy of a patient with CF is currently around 44 years of age, Michael McCarthy, M.D., program founder and associate pediatric program director, explains that the prognosis has dramatically improved in the past decade. “Kids are growing up and becoming adults, getting jobs, and starting families. In fact, more patients with CF are adults now than children.”
“It’s wonderful to be a part of,” says Allison Lambert, M.D. who established the adult CF program as a result. “The important thing is to ensure that kids and adults receive age-appropriate care. A lot of effort is put into this.”
“Dr. McCarthy has been one of my main doctors since the day I was diagnosed,” Greg says. “That clinic was a great part of my childhood and helped me out a lot. It felt like they genuinely cared about you—not just medically, but what’s going on in your life. They felt like friends.”
“We know most of our CF patients very well and that becomes a very important part of our lives and hopefully their lives,” says Dr. McCarthy.
“I think number one is the personal relationship our team develops with our patients, and the excitement we have over big events in their lives— growing up, getting married, having children, graduating from high school or college.”
CF Breakthrough: A New Treatment
Two years ago, Greg was accepted into a clinical trial for a promising new CF treatment. After breaking out in a rash and happily discovering he had been given the actual medication and not a placebo, his life changed for the better a few short days later.
Greg gladly shares that the past few years of his life have been drastically better than before, so much so that he’s forgotten some of the challenges of his condition. The reason? TRIKAFTA, a highly-effective gene modulator that can be used by 90 percent of CF patients depending on
their gene mutation.
“This is an exciting place in the history of CF because of tremendous advances in understanding
underlying causes and the new medications we’re using to make a huge difference in people’s lives,” affirms Dr. McCarthy. “We’re waiting on the threshold of a cure.”
Providence Accepted to Global CF Clinical Trial Network
In addition to the discovery of gene modulators, the Providence CF care team recently received more good news: they were selected to join one of the world’s largest CF clinical trial networks, the Therapeutic Development Network, spearheaded by Drs. Lambert and Chavez.
“The excitement is palpable,” says Dr. McCarthy. “As a result, it’s increasingly easy to have access to studies for generally new treatments to test. Basically, we’re talking about development of new drugs and research to get them to market.”
“The excitement of a treatment that is a true breakthrough,” Dr. McCarthy continues, “and anticipation of even stronger drugs of the same nature and ultimately a true cure by changing the gene, it’s been a wonderful journey.”
Providence Sacred Heart Medical Center is a nationally designated independent Cystic Fibrosis Care Center. Only two centers in Washington state have received this designation.
Interested in learning more about clinical trials or the cystic fibrosis providers and services offered at Providence? Call 509-474-6960.
Read the full spring issue of Heart Beat magazine here.