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how important is getting an official diagnosis right away?
I recently saw a pulmonologist for the first time after accidentally finding out I had pulmonary fibrosis on a HRCT scan for a cardiac artery calcium score test. I’m 70 and completely asymptomatic. No shortness of breath, I’m moderately active – hiking and biking regularly, no crackles, no clubbing of fingers or any other common symptoms of IPF. The CT scan is really the only significant finding as my PFTs were normal (although the DLCO (lung diffusion capacity) was borderline but still normal.
The radiologist said the CT scan showed “reticular opacities with a predilection for the lung cortices consistent with pulmonary fibrosis and with associated traction bronchiectasis, no groundglass opacities are depicted.”
The pulmonologist didn’t want to officially give me a diagnosis of IPF (I assume because I didn’t meet all the criteria for dx.) He thought that I only had a minor amount of fibrosis (he told me on a scale of 1-10 the amount of scarring I had would be maybe a 2 or 3) and also thought it was likely only to progress very slowly and I had a good chance of having many years ahead with no symptoms. However, he also said that it could progress quickly, no real way of knowing for sure, and wants me to return in 3 months for another CT scan (this time specifically for the lungs) and repeat of the PFTs and to meet with him again after that. He said if and when I showed signs of the disease progressing that he would probably want to start me on anti-fibrotics but at this point he didn’t think medication was indicated.
I mentioned this on another forum (on facebook) where some people thought this was wrong and that I should get a second opinion right away – that it is critical to get a proper diagnosis right away. My feeling is that sometimes things aren’t so black and white – that in my case there were too many things that suggested it was better to wait before a diagnosis of IPF was given. I did some research and found an article on the NIH site that suggested that some asymptomatic people with minor fibrosis that seems stable may not get much benefit from anti-fibrotics right away and better to start after the fibrosis is progressing. (my understanding of what the article said).
I like my pulmonologist and he seemed very knowledgeable about IPF. He’s in a major urban hospital here in San Diego. He spent an hour with me carefully going over everything. However, what the people on the forum said planted some seeds of doubt – and I’m now thinking that after I get the repeat CT Scan and PFTs – that I will seek a second opinion – there is a PF Care Center here in San Diego and I think I will seek out one of their pulmonologists – who specialize in PF.
Anyway, I’m curious to hear what people here might have to say or suggest about my situation. thanks!
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