Confirming the diagnosis of IPF

[Tony Buxton]

A routine x-ray indicating possible interstitial  lung disease. So I had a high resolution CT scan.

The scan was examined by a technician from whom I received a report. However, I think I need to seek a pulmonologist who is familiar with rare lung disease, but there are none around where I live in Thailand. I’m too old to go to, Bangkok, which is five hours away.  The report says there is minimal fibrosis at right middle lobe and lower lobes. I have COPD , which is probably mild chronic bronchitis. I am slightly out of breath and cough up a bit of mucus. So it’s very hard for me to know if I have IPF. I am a non-smoker and I don’t think I have ever been exposed to any chemicals.

Would anybody on this forum be able to give me an opinion as to whether the minimal fibrosis is something to worry about or not.  if it is, maybe I should take Pirfenidone. Fortunately I can get this medicine from India at $0.25 per tablet. Because I have no health insurance, nor is there any government healthcare available for me

[Charlene Marshall]

Hi Tony,

Thanks for bringing up this important topic, as I remember thinking an x-ray would suffice when it came to my own diagnosis of IPF, but a lovely member of the Pulmonary Fibrosis Foundation mentioned the importance of a high-resolution ct scan (HRCT). I’m glad you had that done, and have the report but I’d agree with you about having a pulmonologist read it if at all possible. Do you think it might be feasible to have it sent to Bangkok from your physicians office, for their review? Then they could report back to you on it without having to make the trip. Unfortunately this disease can be ruthless, even in those of us who’ve never smoked or been exposed to any agents directly linked to this lung disease. Therefore, if possible, it is important to get proper care for IPF if you do have it, and Esbriet (Pirfenidone) is a good idea even to slow the progress of the fibrosis (even if it is minimal). Do you have any previous scans to compare with to get an idea of how the fibrosis is progressing?

Hang in there Tony and feel free to write us anytime.
Charlene.

[Penelope]

Hi Tony,

I absolutely agree with Charlene that having your scan looked at by a pulmonologist is essential. I’m actually surprised that a technician gave you your report. Usually radiologists read scans. Is it different in Thailand? Also you do need a doctor to make an accurate diagnosis and treatment suggestions. I would suggest to you that deciding on your own to take medication isn’t the way to go. Pirfenid0ne could be the wrong medication for you. Best of luck in getting a diagnosis soon. I know it’s not easy.

[Charlene Marshall]

Hi Penelope,

Thanks so much for getting in touch. I know your reply was for Tony, so I’m just going to tag him here to ensure he sees your encouragement as well, @tarzan. The technicians here in Canada can’t give a report on diagnostic images either, it can only be a physician but I wonder if it might be different in Thailand? Wishing you best of luck Tony and please let us know how you make out.

Warm regards,
Charlene.

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