All the terms and types of PF

[Guest guest]

MB,

Even with open lung biopsy and countless HRCTs and scans....my disease has been labeled just about every one of the terms. The very first thing it was called was Lupus Pneumonitis, which didn't sound so bad. I knew nothing about nothing. Each time I see a different pulmonologist or go through testing at another facility, the diagnosis comes back different. And yes, even Idiopathic. At the end of it all, which seems closer every day, a duck is still a duck. An ugly duckling!

Cynical, yeah. Smarter than ten years ago, yeah. Alive, yeah. Happy about that, yeah. Thankful, oh yeah. They can call it whatever they want. I know it is plain old Pulmonary Fibrosis secondary to numberous autoimune diseases or to medications like Methotrexate for those diseases.

When I got my diagnostic list from my recent hospital stay, there were 8 different diseases, etc. listed. The top one said Severe Pulmonary Hypertension due to Connective Tissue Disease. Under that was End Stage Pulmonary Fibrosis. I would have thought it would say the hypertension was due to the fibrosis. Which it was. Any ideas, nursey?

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

>> ,> You're right most doctors do call it pneumonitis but either word is correct. The definition of both words is an inflammatory illness of the lung. Most of us think of pneumonia as an infection that is treated with antibiotics. If I were guessing I'd say that's how our type of lung disease came to be referred to as pneumonitis, meaning an inflammatory illness of the lungs not involving an infection. > I find it so confusing trying to sort out the terminology! > Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgive