Living with IPF means changing it up

Bob Bruce and BC Lung's Darcy standing together

For Bob Bruce, the experience of being diagnosed with Idiopathic Pulmonary Fibrosis (IPF) has changed  his whole life. Often misdiagnosed, IPF is an irreversible and incurable chronic lung disease marked by breathlessness and chronic cough. In honour of September, Pulmonary Fibrosis Awareness Month, we sat down with Bob at his home in West Vancouver to talk about how important his diagnosis, and the care associated with it, has changed his life.

It all started with a cough. In 2010, a few years into his retirement from the construction and forest equipment industry, Bob went to his doctor for help treating a chronic, dry cough that just wouldn’t go away. At the time, he was diagnosed with sleep apnea – however, his symptoms continued.

Over the next 3 years, the cough worsened. He was having difficulty walking, climbing stairs and was always short of breath. He was always tired, feeling extreme fatigue due to a lack of sleep. Finally in 2014, he went to his respirologist, who suspected that the cause of his symptoms was actually Idiopathic Pulmonary Fibrosis (IPF.)

He reached out for help, attending his first lung support group meeting at St Paul’s Hospital Vancouver, headed by Fran Schooley. It was Fran who supported him in getting a second opinion that led to a confirmation that he was indeed suffering from IPF.

This diagnosis framed the way that Bob’s life with Shirley has changed: IPF is a chronic and degenerative condition, meaning that his life has changed drastically in the past few years. “Everyday things such as chores around the house, walking, climbing stairs and gardening are affected.” It’s not just house work though: “Shirley and I were big boating enthusiasts but sadly we’ve had to give that up. It’s been a dramatic change in our lives. We used to travel a lot but don’t anymore.”

It’s not just hobbies and lifestyle that are affected by Bob’s diagnosis. “Because of my pre-existing condition, it’s very difficult to find insurance coverage.”  

Despite the difficulties associated with IPF, Bob is finding ways to take care of himself. “I am on a home oxygen program which is helping a lot.” He attributes the slowing of his IPF to a drug trial he participated in during 2016, which he’s felt has helped to slow the progression of the disease.

Though this difficulty with insurance has been a real trial, especially a lack of funding for this specific medication that he takes, he’s been blown away by the help he received at St Paul’s Hospital in Vancouver, in particular from Fran and her lung support program.

Maybe even as importantly, Bob takes care of his outlook on his situation: “It’s so important to have a good attitude and a sense of humour in life. I feel very blessed to live in Canada and in particular, British Columbia.”

For those who are also dealing with an IPF diagnosis, Bob has some key advice: “Learn all you can about your disease. Exercise as much as you can within your limitations. Attend lung support group meetings so that you don’t feel alone. Don’t isolate yourself. Comply with everything your doctor tells you to do for your condition.”

As for Bob, he’s optimistic moving forward: by doing everything he can to take care of himself. “I plan to remain positive and live each day to the fullest!” 

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Page Last Updated: 21/09/2017