Wish I could say I’m happy to be here, but I would be lying. Up until one month ago, my only experience with pulmonary fibrosis was from learning the cause of death of one of my wife’s best friends. She was a very heavy smoker, so I just passed it off as another horrible, self-inflicted waste of a life. Now it’s me….
I’m a 75 year old asymptomatic male in good health. I’ve never been a cigarette smoker but I have indulged in very light cannabis use for over 50 years. Not anymore. Several years ago I was diagnosed with sleep apnea and have been using cpap ever since. My sleep doctor is also a pulmonologist. After complaining to her about my excessive throat clearing, phlegm, etc., she suggested I try some medications for acid reflux, asthma, etc. None of these had any affect. She then suggested that I do a series of pulmonary function tests. I passed them all with flying colors. She had mentioned things like a CT scan and some type of nasal test performed by an ENT, but I wasn’t interested. After about a year of this back and forth, I agreed to do a CT scan. I had a regular scan followed one week later with a high resolution scan. Both showed prominent, peripheral markings consistent with IPF. There was no honeycombing or ground glass opacities. My doctor then ordered a panel of blood tests to eliminate several known causes of pulmonary fibrosis and I was negative for all.
I was referred to another pulmonoligist who specializes in interstitial lung disease, and I’ve had one appointment with him so far. During my visit, he had me do a 6 minute walk test and, according to the nurse who administered the test, she has only seen one person (much younger) score higher. I will be returning for another visit soon for follow-up pulmonary testing and a discussion of the two IPF medications. After viewing my scans, this doctor reported that I have mild presentation of “probable UIP.” He does not recommend any type histological testing for IPF, so I assume he’s convinced that’s what I have. Also, he thinks that all of the initial complaints I had concerning throat clearing, phlegm, etc. were due to allergies and post nasal drip. So my UIP diagnosis was a total accident. Possibly devine, and yet to be determined…..
I can accept that I have lung scarring. I’ve had pneumonia several times in my life following the flu, and I had a case of covid that left me weak and breathless for many weeks. What is really hard to accept, however, is that there apparently is not a way that a highly experienced thoracic radiologist can differentiate old, burnt out scarring from active, progressive fibrosis. It appears that IPF, by definition, is not relic.
I wish all of you the best as you deal with this horrible disease. At this point I have no idea what you’re going through, but I hope to help as much as possible.
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