Photo © Courtesy of Canadian Pulmonary Fibrosis Foundation
“I’m grateful for a new pair of lungs”
Rob Garbutt of Winnipeg, Manitoba lived with idiopathic pulmonary fibrosis (IPF) for a remarkable 12 years, before receiving a lung transplant on July 21, 2022. A chronic and debilitating condition, pulmonary fibrosis (PF) causes irreversible scarring (fibrosis) of the lungs that makes it difficult to breathe and reduces oxygen flow to the body. The survival rate for PF is usually three to five years after diagnosis.
A physically active fellow, who skied, waterskied, and rode mountain bikes, Rob didn’t seem to recover as usual after a bout of flu. He was first misdiagnosed with chronic obstructive pulmonary disease (COPD) and then later with IPF (one of the most common types of PF, where the cause is unknown.) After being hospitalized for a week in 2019, his condition then worsened over time.
Rob worked hard to stay as fit as possible, with medication, exercise and oxygen therapy, while he waited for the call for a lung transplant. That day came in July. Supported by his wife Beth (and dog Maggie), Rob continues on his transplant recovery journey and is hopeful about his future. “I’m not one to be stopped,” he says.
Rob’s case is exceptional. Not all of the 30,000 Canadians living with PF are eligible for a lung transplant, even if there were enough organs available. A lung transplant is the only long-term treatment for this chronic, incurable disease, but comes with its own set of health challenges.
Although it should be an effortless act, breathing, for people with a rare lung disease like pulmonary fibrosis, can be a painful, anxiety-inducing experience. A 2022 CPFF patient and caregiver survey found that 20 per cent of patients did not receive an oxygen therapy prescription when they needed it. In addition, more than one third have no backup oxygen in the event of a power failure.
“Along with limited oxygen access, our survey showed that patients are waiting up to three years for a diagnosis and treatment options can be limited,” says Sharon Lee, Executive Director of the Canadian Pulmonary Fibrosis Foundation (CPFF). “We need to keep advocating for change, and with increased awareness and continued investment, we believe we can help lessen the countless burdens this terrible disease places on people across Canada.”
What are you grateful for? Take the 21 Days of Gratitude Challenge
During this holiday season, think about the things that you are grateful for and take the 21 Days of Gratitude Challenge, between December 1 and December 21. Share your blessings on the free CPFF app from the Apple app store or on Google Play and follow CPFF on Facebook, Instagram, and Twitter. We’ll prompt you with a daily question on what you are grateful for.
Send a specially designed gratitude e-card, including some with holiday motifs, to someone special when you make a donation to CPFF during the 21 Days of Gratitude Challenge. Donate today to support those living with pulmonary fibrosis at cpff.ca/gratitude
© Courtesy of Shriners Hospitals for Children – Canada Shriners Children’s is celebrating 100 years of changing the lives of children all over the world
The Canadian Pulmonary Fibrosis Foundation (CPFF) is a registered Canadian charity established to provide hope and support for people affected by pulmonary fibrosis (PF). Our charitable registration # is 850554858RR0001.