Sep 9, 2014
This is a disease that is 100 percent fatal for every patient. Have you ever heard of this rare disease? Did you know: 40,000 people will die from pulmonary fibrosis (PF) this year -- the same number of fatalities as from breast cancer.
There is no known cause or treatment for PF, and the disease is relentlessly progressive; average prognosis is two to five years from diagnosis. PF can be inherited, but most cases are idiopathic -- meaning the cause is unknown. She was diagnosed almost two years ago.
She has been hospitalized three times since the end of June. My father was at the end of his cancer treatments then. To visit her, I had to push him in a wheelchair because it was tremendously painful for him to walk.
Two weeks ago, the Palative Care Team called a family meeting for my mother. She is at what the medical field calls "end stage." There is nothing more they can do for her. Two days later, we arranged for hospice to deliver equipment to my house. My mother will stay with me until this awful disease takes her life. The doctors think she has a matter of months.
PF patients gradually lose the ability to process oxygen as their lungs fill with scar tissue and become like concrete. She's been on oxygen 24/7 since June. She can no longer walk without her oxygen level dropping to 50% or lower. Then it takes 20 minutes or more for it to rise back to 80%.
Four times as many people have pulmonary fibrosis as ALS or cystic fibrosis.
Since 1999, the number of patients with PF has increased by 156 percent, to more than 128,000, and more than 50 percent of cases are misdiagnosed for a year or more.
A lung transplant is the only treatment option to extend life, but 50 percent of those on the list will die before receiving a transplant. Because my mother also has COPD, we were told she is not a candidate for a transplant.
September is Global Pulmonary Fibrosis Awareness Month. For more information go to www.pulmonaryfibrosis.org.