Monday, 25 February 2013

What is Idiopathic Pulmonary Fibrosis?

We have learned there is no quick and easy answer to this question. "Idiopathic" means they have no idea what causes the disease. The first thing you think of is, how did I get this? Science is trying to find and answer and you will be asked about areas of employment and where you grew up. All this in an effort to pin point a common cause in sufferers. We can't lay the blame at the feet of smoking for this one but undoubtedly if you are/were a smoker, as Carl was, it had an effect.
Mexico, January 2009
Pulmonary fibrosis (PULL-mun-ary fi-BRO-sis) is a disease in which tissue deep in your lungs becomes thick and stiff, or scarred, over time. The formation of scar tissue is called fibrosis. This impedes the ability of the lung to absorb or process oxygen to the blood.
Carl was originally diagnosed in 2009. We had no idea what exactly that meant. Life expectancy is 3-5 years, there is no cure. Oxygen therapy is essential to function. A lung transplant is the only solution.
IPF (short form) cause a deep hacking cough. I was buying "Fisherman's Friend" cough lozenges, 10 packs at a time. His prescribed drug, Prednisone, was increased and finally after weeks of coughing, he has relief.  Carl was hospitalized in July 2012 with a lung infection and upon release from hospital was on O2, 24/7.
We were at an appointment with the Respirologist when Carl suddenly asked, "What about a lung transplant." We were pretty sure that the answer would be, "No, you are too old." The Dr said that that would be an option if we were willing to go through all the testing but he found most people did not live long enough to be approved. Not exactly the encouragement we were hoping to hear.
We decided to forge ahead!
posted by Susan

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