Hi Nina,

This disease is hard to wrap your mind around when you are symptomatic. I was diagnosed in 2016 because I had cancer. Subsequent CT scans have shown still mild disease with no progression six 1/2 years later. Last fall it turned out I had a severely prolapsed mitral valve and had to have heart surgery. The only reason I tell you this… Read more

Hello,

I live in an area that gets wild fires and often gets poor air quality because of it. What are the guidelines for IPF and poor air quality? At what point do I need to limit activities and take precautions and what are those precautions? My lungs currently are not too bad and I would like to keep them that way as long as possible.
Darcy

Hi Chati,

I may not be the best person to answer this because I am still learning about IPF myself but, I believe the answer is that the course of the disease varies from person to person. Some people, like myself, live with mild disease for years while others progress more quickly. I was diagnosed six years ago and still maintain good… Read more

Thanks for the advice Marianne. I think it is good advice to start the medicine soon even though I don’t have much in the way of symptoms yet. But I guess that is the point, right?

Darcy

Michael, you hit the nail on the head. We have a progressive disease that is unpredictable and I dislike the idea of waiting until the condition worsens to take medication to slow the progression. Living with side effects may be the price we have to pay to live longer just as is the exercise which is not always easy when you don’t feel well.… Read more

Thanks Christine. It’s nice to know there are people who tolerate the meds and know how manage side effects.

Thanks Jeff. That is helpful information.

Darcy

Hello,

I actually was diagnosed six years ago but no one told me anything about IPF and I didn’t realize how serious it is or even really what it is. They did a CT scan two years in a row and said it was stable and mild so I thought it was something that would never effect me. Then last fall my mitral valve was severely prolapsed and I had open… Read more

Hi Michael,

I just saw my doctor today and was diagnosed with IPF. I had an inkling I had it because of an earlier CT scan that showed fibrotic changes although I had received no follow-up for that so today was the day I really knew. I don’t know what your situation is but my disease is still mild. I told my kids I was seeing the doctor today… Read more