September 2021 has been named Pulmonary Fibrosis Month in Manitoba. Our partner organization, the Canadian Pulmonary Fibrosis Foundation, is raising awareness, funds and hope through Canada-wide virtual events. |
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Winnipegger Warren Harper first became aware of his Pulmonary Fibrosis after a co-worker noticed he had a bad cough. When it didn’t go away he visited his doctor and eventually a specialist who diagnosed IPF. |
“Initially my life was not too different,” Warren says, “but as time went on it affected all aspects. Things I took for granted such as taking a shower, walking up a flight of stairs or vacuuming became impossible. I needed a walker, then a scooter and finally a wheelchair.”
Initially Warren got most of his information from the internet, which “had some scary info,” he says. Working with his doctors he joined a clinical study for a drug to slow the progression of his IPF, and eventually received a double lung transplant in 2018.
“The transplant absolutely changed everything for me,” Warren says. “Before I was on 10 litres of oxygen and was hardly able to walk 100 metres. Now I can cut my own grass, shovel my driveway, and lift my 6-year-old granddaughter up for a big hug.”
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Debbie Homik, is a respiratory therapist, and Amy Webb, whose father passed away from PF in 2017, co-moderate Winnipeg’s Pulmonary Fibrosis patient support group. |
The Winnipeg Pulmonary Fibrosis support group |
Debbie says since PF progresses so differently for every patient it gives people hope to meet others in the group who have had the disease for years and are still living healthy lives.
“We’ve watched friendships develop, support and encouragement given to each other during good and bad times. Our people on the lung transplant list are cheered on every month, anxious for updates. It is truly a sense of community.”
“We all care deeply for each other,” says Amy, “and we try our hardest to help when someone is struggling. Whether that’s giving suggestions, words of encouragement or just listening to someone talk. We’re there for each other.”
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What is Pulmonary Fibrosis?
Pulmonary fibrosis is a long-term disease where the lungs (pulmonary) become scarred (fibrosis), making it hard to get oxygen to organs and the body. When the cause of the disease is not known it is called Idiopathic Pulmonary Fibrosis (IPF).
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What are some of the signs of IPF?
Lack of oxygen can cause different signs and symptoms, including shortness of breath, frequent dry cough, and a “crackling” sound in the lungs that can be heard with a stethoscope. The Lung Association’s IPF handbook dives deeper into common symptoms of Pulmonary Fibrosis.
Is there a cure?
Pulmonary fibrosis is a chronic (long-term) disease, which means other than a lung transplant, it cannot be cured. There are however, ways to help manage the disease including medications, removing contributing factors (like smoking) and the use of supplemental oxygen.
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Where can I get help?
Receiving a diagnosis of IPF can be very difficult. There is no right or wrong way to feel. Everyone will cope differently. Speak with your doctor about the right course of treatment and educate your family and friends about IPF so they can find ways to be supportive and helpful. Consider ways to modify activities to save energy – the Lung Association Guide to Living with Idiopathic Pulmonary Fibrosis Handbook has suggestions for managing and living with an IPF diagnoses.
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The Winnipeg IPF support group meets monthly, currently via zoom. The group is open to patients, family and friends to help understand what Pulmonary Fibrosis entails and support those living with the disease. For more info, call Debbie at 204-955-8100 or email Winnipeg.ipf@gmail.com
The Manitoba Lung Association also hosts a Lung Transplant Support Group and a new COVID-19 Survivors Facebook group. For more information call 204-774-5501.
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What can I do?
Check out ‘Hope Breathes Here’ events
Approximately 30,000 Canadians live with Pulmonary Fibrosis, and several thousand die each year. The Manitoba Lung Association is working together with the Canadian Pulmonary Fibrosis Foundation to support people living with pulmonary fibrosis and to find a cure. Check out the Hope Breathes Here webpage for events, webinars, and information near you.
Become an organ donor
Organ and tissue donation saves lives. An organ transplant is often the only treatment for people with serious lung damage from injury or diseases such as IPF.
“My transplant was only possible by the decision of my donor, and I am extremely grateful,” says Warren. “Without them, I would not be here to share my story, and I will honour that decision.”
By signing up online you can register your intent to be a donor, and help give someone like Warren a second chance at life. |
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