It all began for Peter Guyette when he noticed he was getting more winded than usual when walking upstairs.
“It really bothered me. Then, one day I found myself gasping for air and just couldn’t catch my breath. That really got me scared and I made an appointment to see my primary care doctor,” said Guyette.
“He sent me for a pulmonary function test and the results were not good, so he sent me to see a pulmonary specialist at Baystate Medical Center,” he added.
Pulmonary function tests measure breathing and how well the lungs are functioning by taking in air and exhaling, and how efficiently they transfer oxygen into the blood.
Idiopathic pulmonary fibrosis
When Guyette met with Dr. Puncho Gurung, the Baystate pulmonologist ordered further tests, including another pulmonary function test and a CT scan, which showed some scarring in his lungs. Once again, the results were not promising. The diagnosis: idiopathic pulmonary fibrosis, a condition in which the lungs become scarred and breathing becomes increasingly difficult as the thick scar tissue slows the flow of oxygen from the lungs to your blood.
There is no cure for idiopathic pulmonary fibrosis, but doctors can help to manage the disease and its symptoms for patients like Peter. Ultimately, to survive, patients will need to have a lung transplant.
That’s why Dr. Gurung arranged for Guyette to see a doctor at Massachusetts General Hospital, where such a transplant would occur.
“However, the doctor there told me that my body mass index was too high and that I would need to lose some weight before they could place my name on the transplant list,” Guyette said.
Reducing his weight
In the meantime, until he loses the weight, Guyette is on a course of oxygen therapy designed to reduce his shortness of breath and allow him to be more active. He also takes the oral drug Esbriet, which in some clinical trials, was shown to maintain more of a patient’s breathing capacity.
Also, since his diagnosis, Guyette he has been spending three days a week, just over one hour each visit, at Baystate Medical Center’s Pulmonary Rehabilitation Program. Pulmonary rehabilitation is standard treatment for people who have chronic lung disease and involves exercise training, nutrition counseling, and learning breathing strategies and energy-conserving techniques and more.
“It gives me a reason to get up in the morning and do something that will help me feel somewhat better. I enjoy being with other patients there, and the staff is just wonderful. They watch over you very closely checking your stats all of the time and always suggesting something different if one therapy isn’t working. I still get very short of breath at times, and some days are worse than others, especially rainy days and sometimes when it’s humid outdoors,” said Guyette, who works out on the treadmill, arm bike, a Nustep, which is like a seated stepper, as well using free weights while at the pulmonary gym.
Donna Hawk, RRT in Pulmonary Rehabilitation was quick to return the compliment.
“Peter has been with us since October 2014 and is very dedicated to maintaining his health and doing whatever it takes to bring him closer to getting his name placed on the lung transplant list. He follows instructions very well, especially for using his oxygen, and that is not an easy thing. It can be very frustrating and even embarrassing for some people to wear it out in public,” said Hawk.
“So, for Peter, it’s really all about maintaining good health in preparation for a lung transplant, and the more fit a person is going into the operation, the better the outcome for them,” she added.
Baystate's Pulmonary Rehabilitation Program
Baystate’s pulmonary rehabilitation program is a multidisciplinary pulmonary rehabilitation program, the only one of its kind in western Massachusetts, and is one of only eight pulmonary programs in Massachusetts certified by the American Association of Cardiovascular and Pulmonary Rehabilitation.
Guyette isn’t the first in his family to be afflicted with the disease. His brother died two years ago at age 63 of a very rapid case of IPF.
In some people like Peter’s brother, the disease can progress rapidly, while it is slower for others and can even stay the same for years.
“Luckily for me, mine in on the slower side,” said Guyette, 67, about the disease which typically affects middle-aged and older adults.
The role of genetics
According to the National Heart, Lung and Blood Institute, genetics may play a role in causing IPF and if more than one member of a family has IPF, the disease is called familiar IPF.
One thing the brothers did share is the type of jobs they held over the years. It is known that being exposed to certain pollutants in various occupations can increase your risk of developing IPF.
“We had a lot of similar jobs inhaling dust and all sorts of things while working in warehouses. I also worked at a gas station and my brother later worked in a precision shop, where he was always grinding and didn’t wear a mask. And, when we were younger, we helped my father install burners in homes and we were exposed to asbestos,” said Guyette.
As for getting his name on the transplant list for a lung, Guyette said over the last couple of years he has lost about 25 pounds just by “cutting back.” He has about 15 more pounds to go before he will be considered for the list.
“I’m going to be seeing a dietitian to help me shed the remainder of my pounds,” said Guyette, hoping to get on the list sooner than later.