IPF Awareness Day - 19Sept

14Sep

Until we have another schedule change, this is our last regular Friday physio and what a better way to finish off than a visit from Mark! His daughter, Jessica, let us know that he’d been admitted on Wednesday night after suffering for two weeks with zero zip and pain just under his lower rib cage. They’ve zapped him up with some pain meds and antibiotics and commit him to bed rest.

You can imagine our surprise when his first out-of-bed foray is to come up to the Treadmill Room! When I met him in the hallway he said, “They told me I should walk and move about if I could, so I had to come and say hello to all my physio friends! I’m going to see if I can do some stretches and weights too.” No treadmill, biking, steps or squats today, but true to his word, Mark does a fine job of his stretches and some gentle weights.

This is the stuff our friends in the transplant program are made of - Sheer Determination! Jessica is to be married next weekend (22Sep) and Mark is determined to walk her down the aisle, so lounging in a hospital bed is not on his agenda! Go Mark! (just don’t overdo it Buddy).

~  ~  ~  ~  ~  ~  

The Canadian Pulmonary Fibrosis Foundation has decided to align it’s month of building awareness for this illness with the US association. This year, September marks the first IPF Awareness Month in Canada and next Wednesday, (September 19th) has been set aside as IPF Awareness Day at Queen’s Park. The day has been planned to allow executive of the foundation, patients, their families and survivors to bring attention to the illness, its affect on Canadians and the need for research funding. 

We lose 5,000 Canadians annually to pulmonary fibrosis (scaring of the lung tissue), and currently have 30,000 diagnosed patients - the majority have idiopathic pulmonary fibrosis. This means that when their IPF is diagnosed and they ask, 

• “How did I get this disease?” their physician responds, “We don’t know.”
• “What is the treatment plan?” their physician responds, “We don’t have one.”
• “How do we cure it?” their physician responds, “We can't.”

The disease is progressive, i.e. the scarring spreads and reduces the function of the lung so the patient’s breathing becomes more rapid and shallow and they are less able to absorb oxygen from the air. The best that can be done is to manage individual symptoms and treat the patient with:

• oxygen therapy for severe shortness of breath, and insufficient oxygen to the vital organs
• medication for the pulmonary hypertension that often accompanies the disease
• an increase in caloric intake to battle weight loss (high calorie, high protein supplements such as Boost or Ensure are helpful with this), which is a challenge for the patient due to loss of appetite and an oxygen starved digestive system

There is nothing to stop the scar tissue from advancing throughout the lungs, reducing their function so essentially, the disease will eventually suffocate the patient. Lung transplant is the only option and IPF patients receive about 45% of lung transplants done in Canada.

Here is a link to the foundation’s website (Canadian PFF) and I’ll be adding it as a link in the Become a Donor section of this page (bottom right). The online patient guide that you’ll find linked to the homepage is very well written and explains the disease in more detail.

We need research to develop treatments and even better, a cure - which takes funding...and in the meantime, we need to increase the registered donors in each province - which takes only 2 minutes of your time and a chat with your family members to ensure they understand your wishes.

Thank you