Re: Familial Pulmonary Fibrosis
I don't have any real knowledge to add, but wanted to wish you and your family well. My mother died of Pulmonary Fibrosis -- diagnosed at age 73, 2 years after a bout of pneumonia that may have triggered it. She died less than a year after diagnosis.
The lack of knowledge about this disease was very frustrating for me and my family. What was most frustrating was that we could see that she was dying quickly, but every health care worker seemed to be denying it. They kept delaying giving her the treatments and supports she needed until 3 or 4 weeks after she needed it. We kept saying, "She needed this last month," with each step up in the support they would "allow" her to have -- more oxygen, morphine, hospice services, etc. She and our family could see the rapid progression of the disease, but the professionals all seemed to be in some sort of denial. (and money was not an issue) I wanted to slap them.
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discuss with your PCP when you should have screening exam by Pulmonologist and try follow healthy lifestyle.
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