Being diagnosed with Idiopathic Pulmonary Fibrosis (IPF) changed my whole life. It started with a cough that just wouldn’t go away…
How did your lung journey begin?
It all started with a cough. In 2010, a few years into my retirement from the construction and forest equipment industry, I went to my doctor for help treating a chronic, dry cough that just wouldn’t go away. At the time, I was diagnosed with sleep apnea, but my symptoms continued.
Over the next 3 years, the cough worsened. I was having difficulty walking, climbing stairs and was always short of breath. I was always tired, feeling extreme fatigue due to a lack of sleep. Finally, in 2014, I went to a respirologist, who suspected that the cause of his symptoms was actually Idiopathic Pulmonary Fibrosis (IPF.) Often misdiagnosed, IPF is an irreversible and incurable chronic lung disease marked by breathlessness and chronic cough.
I reached out for help, attending my first lung support group meeting at St Paul’s Hospital Vancouver, headed by Fran Schooley. It was Fran who supported me in getting a second opinion that led to a confirmation that I was indeed suffering from IPF.
What challenges have you faced due to the diagnosis of your condition?
This diagnosis framed the way that my life with my wife, Shirley, has changed: IPF is a chronic and degenerative condition, meaning that my life has changed drastically in the past few years. Everyday things such as chores around the house, walking, climbing stairs and gardening are affected. And it’s not just housework. 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. Because of my pre-existing condition, it’s very difficult to find insurance coverage too.
What helps you manage your condition?
Despite the difficulties associated with IPF, I’m finding ways to take care of myself. I am on a home oxygen program, which is helping a lot. I attribute the slowing of my IPF to a drug trial I participated in during 2016, which I feel 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 the specific medication I take, I’ve been blown away by the help I received at St Paul’s Hospital in Vancouver, in particular from Fran and her lung support program.
Maybe even as importantly, I take care of my outlook on my 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.
Do you have any advice for others dealing with an IPF diagnosis?
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 me, I’m optimistic moving forward. I plan to remain positive and live each day to the fullest!