My name is Cheryl (Koschalk) Comsia and I live in Puyallup, WA., and I'm writing on behalf of my family.
September is pulmonary fibrosis month.
We are asking your help to spread the word about this terrible disease. Very few people know about it even though many well-known celebrities have died of IPF; Evil Knievel, Robert Goulet, Marlon Brando, Peter Benchley and Mike Nichols. Jerry Lewis suffers from pulmonary fibrosis as well.
Every year IPF strikes as many people as breast cancer. 128,000 last year!! There are many survivors of breast cancer (I'm one of them), but there are NO survivors of IPF... unless you have a lung transplant. After a diagnosis of pulmonary fibrosis, the prognosis is "usually" 3-5 years. With a lung transplant the 5 year survival rate is only 40%.
My family knows firsthand about this disease. My father, Ed Koschalk, was diagnosed with IPF in 2005, but not serious enough to need oxygen. In 2008 Dad began using oxygen 24/7. Even though we had one of the greatest experts in IPF caring for him at the University of Washington Hospital in Seattle, there wasn?t much that could be done for Dad. There is no cure! There are different medications that are tried, none will cure, but hopefully they buy time. Dad was too old for a lung transplant. Pulmonary fibrosis scars and thickens the tissue around and between the air sacs (alveoli) in your lungs. This makes it more difficult for oxygen to pass into your bloodstream. The damage can be caused by many different things - including airborne toxins in the workplace, certain lung diseases and even some types of medical treatments.
From the time of Dad's diagnosis when a physician's assistant heard his lungs "crackle" Dad began a form of torture. He loved working in the yard, shoveling snow, anything to be outdoors. Dad just couldn't do those things anymore. He couldn't even come up a flight of stairs without stopping to catch his breath, even on oxygen. Later even taking a shower was difficult. All of this was so hard for us to watch - PopPop just sitting in his chair instead of being busy. Dad was finally in a wheel chair when he was diagnosed with invasive lung cancer. Chemotherapy and radiation didn?t help either disease. When he died he was not able to breathe 15 seconds without oxygen. He was suffocating! Please help us get the story of pulmonary fibrosis out to the public. It is a horrible disease to have and equally horrible to watch someone you love die of it.
In order to breathe, your lungs need to be stretchy (compliant), in order to fill up with air - like a balloon. In pulmonary fibrosis, the scarred and damaged lungs are hard, and non-compliant, when you breathe. This may cause problems, such as shortness of breath, cough, and other heart and lung problems, such as pulmonary hypertension.
What we are asking is that perhaps you could air public service announcements in September which is Pulmonary Fibrosis Awareness month. If you would like more information the Pulmonary Fibrosis website has information for the media http://www.pulmonaryfibrosis.org/media. You have the ability to inform the general public that the chronic cough they try to ignore, the shortness of breath they attribute to getting older/weight/out of shape, etc. might just be something that they truly need to have checked.
Cheryl Comsia and Family