Living with pulmonary fibrosis
John Dominguez can't wait to get back out on the golf course.
Before the Dalton, Mass., resident was diagnosed with pulmonary fibrosis in 2010, the avid golfer spent July through September on local fairways. Over the last six years, his lung disease progressed to the point where he couldn't walk across his living room without the aid of oxygen and his favorite past time was retired.
But all that changed on Valentine's Day when Dominguez received a call from Brigham and Women's Hospital in Boston.
"They basically told me to come right away — that they had a lung for me," he said, during a recent interview at his home. "I never thought that I would get to this point. I started the process to get a lung transplant in 2010 ... I was put on the active transplant list on May 4, 2015."
When diagnosed with idiopathic pulmonary fibrosis (IPF), an autoimmune lung disease in which the lung tissue becomes thickened, stiff and scarred, the options for treatment were limited to lifestyle changes, supplemental oxygen and lung transplants.
"[In 2010] I was told the average life expectancy for someone with this was three to five years. There's no cure for it. Back then, there wasn't any medication to help treat it," he said.
As he navigated the lengthy process of qualifying for a lung transplant, Dominguez and his wife, Martha, began making changes at home. They changed diet and exercise routines, ripped out carpeting that could harbor potential irritants and joined the monthly IPF support group at Berkshire Medical Center in Pittsfield, Mass.
"I weighed 265 pounds when I was diagnosed. I lost 65 pounds. I had both my knees replaced so I could do my exercises," he said.
In October 2014, U.S. Food and Drug Administration approved the first two prescription drugs to treat IPF. While not a cure, the drugs help slow down the progression of the disease.
"I tried Esbriet from Jan. 1, 2015 until that Father's Day in June. I experienced one of the side effects, which was a bad sunburn," he said. "In November, my pulmonologist said to go ahead and try Ofev. I was on it until I got my transplant."
But of all the tests, drugs and treatments available, Dominguez says the greatest help has been the people he's met through the IPF support group, which he and his wife now run.
It's where he met fellow transplant recipient Jean Guiliano, a retired special education teacher from New Haven, Conn.
"Everyone's experience is different, but in the group, everybody knows what everyone else is going through. We share stories," she said. "I belong to a support group at Yale and to the one at BMC. I'm on the call list. I'll meet with individuals and couples about transplants and talk to them about the experience."
She pointed to the differences in the progression of the disease, which in her case, is more common in men. For Guiliano, her diagnosis came after complaints of a dry hacking cough. Her symptoms were very few for several years, but once the disease progressed, her health began to decline rapidly, she said. Comparatively, Dominguez's diagnosis came after doctor's visits for a dry cough and breathlessness. He experienced a slow decline in health as his disease progressed.
Both believe education and support are key to dealing with all the steps that come before and after a transplant.
According to the Chicago-based Pulmonary Fibrosis Foundation, about 50,000 people are diagnosed with a form of pulmonary fibrosis each year.
"We don't know how to cure it, but it's a really inspirational time. We now have therapies for this disease and the community is really coming together," Dr. Gregory P. Cosgrove, chief medical officer for the Pulmonary Fibrosis Foundation, said during a telephone interview. "Because it is a truly rare disease — there are about 180 types — we are still learning about it. We're learning more and more each day, as more and more people become part of our data registries.
"For patients who receive a lung transplant, it really changes their lives. It's a night and day experience limited to a few select," he said, emphasizing the need for individuals and families to join support groups.
"We can't project who is going to progress rapidly and who isn't," Cosgrove said. "Support groups can help patients focus on what they can control. They provide broad insight and optimism."
Dominguez said the local IPF support group will continue to play a major role in his life and his recovery process.
"It's going to be a while still, but I'm looking forward to getting back out there," Dominguez said of returning to the support group and the golf course. "Every week, I get better. I have a physical therapist that comes twice a week to work with me, as well as visiting nurses. I can do 15 laps in the house now."
What: Pulmonary fibrosis support group
When: Next meeting is 4 to 6 p.m., May 26
Where: Dining Room B at Berkshire Medical Center, Pittsfield, Mass.
Info.: Facilitators John and Martha Dominguez at 413-684-5015
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