Marianne Sarazin, left, and Gary Cunningham, right, recently spoke at the Pulmonary Fibrosis Foundation’s virtual summit. Cunningham was diagnosed with pulmonary fibrosis in 2011 and had a double lung transplant in 2019.

Marianne Sarazin, left, and Gary Cunningham, right, recently spoke at the Pulmonary Fibrosis Foundation’s virtual summit. Cunningham was diagnosed with pulmonary fibrosis in 2011 and had a double lung transplant in 2019.

Photo provided by Anna Figy


Couple speaks out on pulmonary fibrosis experiences, caregiving

By: Eric Czarnik | Sterling Heights Sentry | Published November 24, 2021

STERLING HEIGHTS — Gary Cunningham and his wife, Marianne Sarazin, are spreading the word about pulmonary fibrosis and how to manage it.

The couple recently gave presentations at the Pulmonary Fibrosis Foundation’s virtual summit. Sarazin spoke Nov. 9 and gave a caregiver’s perspective during “Caring for Yourself when Caring for Others,” and Cunningham spoke Nov. 13 and presented a patient’s perspective during “The Lung Transplant Experience.”

The couple, who live in Troy, host a support group in Sterling Heights for people whose lives are touched by pulmonary fibrosis. Cunningham explained that the PFF’s summit was held virtually this year due to COVID-19.

“Many of us who have this disease end up becoming very immunosuppressed,” he said. “COVID is an especially dangerous thing for us.”

He said even attendance among members of the pulmonary fibrosis support group has been down, from 20-30 to six, due to many people avoiding public interactions. He said some have barely left the house in 18 months.

Cunningham described his type of idiopathic pulmonary fibrosis as a condition in which a trigger — like a cold or the flu — can make the immune system go haywire, attacking air sacs in the lungs, hardening the lungs and severely reducing the ability to breathe and get oxygen.

Pulmonary fibrosis runs in Cunningham’s family. He said his grandfather died at age 64 after having the disease for around six months, and his mother died at age 61 after having it for around 14 months. Cunningham was diagnosed with it in 2011, at age 58.

“I’ve been struggling with this disease for 10 years,” he said. “I lasted eight years until the transplant in July 2019 and have been doing quite well since then.”

He said he signed up on a Henry Ford Health System waiting list for a double lung transplant around January 2017. But as his condition grew worse, he was later able to get on a Spectrum Health donation list, too. Shortly afterward, he heard that Spectrum had found a pair of lungs, so he and his wife took a night drive across the state to get the transplant in July 2019. The surgery was “an absolute, complete success,” he added, calling the surgeon “phenomenal.”

The success means he doesn’t have to tote an oxygen tank anymore, adding that his new lungs are “working extremely well.” The only downside is some side effects from transplant medications, he added.

Sarazin said they learned about the Pulmonary Fibrosis Foundation after they searched for a support group and found one in Sterling Heights at a church near where she grew up.

“When Gary was first diagnosed, I didn’t know anything about the disease,” she said. “That’s how we got involved in the support group, which led to the PFF. … It’s just been kind of a godsend all these years. … We talk to them about different hospital systems, the different doctors that were involved. It’s a close-knit community of people because it’s a rare disease.”

Since then, Cunningham has been an ambassador — and is now an ambassador emeritus — for the PFF, and Sarazin is an ambassador, too. They have attended the PFF’s summits, educated people about the disease, and raised money for the foundation.

“I’ve traveled all over the country giving presentations on behalf of the Pulmonary Fibrosis Foundation (about) the disease and my history with it, the lack of funding for research programs, and problems with getting oxygen for patients,” Cunningham said.

The couple said the disease not only affects the patient, but the people around the patient.

“It affects everything in your life, from simple things around the house that Gary couldn’t do anymore. Now that he’s had a transplant, he can’t work in the yard anymore,” Sarazin said. “We don’t travel much anymore because it’s hard on Gary. Just everyday things can be a struggle when they cannot breathe.”

Cunningham recommended three things that anyone recently diagnosed with the disorder should do.

“They have to get the best pulmonologist they can find to treat them, even if that means going to a different hospital,” he said. “They have to get involved in pulmonary rehabilitation and stay at it. And thirdly, they need to find a good support group and actively attend those sessions.”

Sarazin emphasized the things caregivers should keep in mind.

“I would say, don’t be afraid to ask for help. It’s not an easy disease to live with. You end up taking on more and more things because, as a caregiver, your spouse or whoever you’re taking care of becomes less and less able to do daily things. And make sure you build up your own support group and your own relief for the stress that’s involved.”

Learn more about the Pulmonary Fibrosis Foundation by visiting www.pulmonaryfibrosis.org.