Without knowing all the facts it's difficult to comment but I have IPF and was diagnosed in September, 2011 and was confirmed with both a VATS and a week of tests at the leading research center for IPF, National Jewish Health in Denver. I'm one of the 200,000 people in North America with PF and 48,000 are diagnosed each year while 40,000 die from the disease each year. Many live normal lives with some limitations 10 or more years.
The medical community has all but a total lack of knowledge about PF. The numbers they are working with that say a 3 to 5 year life expectancy after diagnoses are just garbage for a small survey taken years ago, and taken with patients in the final stage's of this nasty and still unknown disease.
Your best friend will be Google and the various online support groups comprised of patients on Facebook and Yahoo. If I was in your shoes I'd try to get your Mom into a center of excellence (where lung disease is the focus) such as Duke, Cleveland Clinic, National Jewish Health, and make sure you get a full diagnoses from somebody who knows about the disease, not simply possesses the credentials on the wall.
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Without knowing all the facts it's difficult to comment but I have IPF and was diagnosed in September, 2011 and was confirmed with both a VATS and a week of tests at the leading research center for IPF, National Jewish Health in Denver. I'm one of the 200,000 people in North America with PF and 48,000 are diagnosed each year while 40,000 die from the disease each year. Many live normal lives with some limitations 10 or more years.
The medical community has all but a total lack of knowledge about PF. The numbers they are working with that say a 3 to 5 year life expectancy after diagnoses are just garbage for a small survey taken years ago, and taken with patients in the final stage's of this nasty and still unknown disease.
Your best friend will be Google and the various online support groups comprised of patients on Facebook and Yahoo. If I was in your shoes I'd try to get your Mom into a center of excellence (where lung disease is the focus) such as Duke, Cleveland Clinic, National Jewish Health, and make sure you get a full diagnoses from somebody who knows about the disease, not simply possesses the credentials on the wall.
January 31, 2012 - 9:56amThis Comment
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