Pulmonary fibrosis

Hi Debora

I think it depends on the "flavour" of the condition which you have. There are many types of IPF. I knew I had a problem about 5 years ago and i was diagnosed 1 year ago so mine is slow moving.  I have been tracking my FVC every week as part of a medical trial for 12 months and it has not moved at all. In fact is is still above normal.  My gas transfer is is at the bottom of the normal range this is the reason I get breathless on exercise.   I  am taking Nintedanib.

I know I am very fortunate so lets hope you are too.

Best wishes

Brian

Hi Debora, my thoughts are with you right now.  Don't have an answer or much advice other than stay healthy, exercise and take each day as it comes.  I know it's easy to say and not easy to do.  

As epictetus mentioned, it is early to make predictions as it sounds like you don't have a full diagnosis as to which version of IPF you have. I'm 67 and no grandkids and expect my wife will outlive me anyway. And I'll almost certainly lose the cat before I go. That's a bummer too. So it goes. 

So playing the numbers game is premature. As for myself, I do it all the time. But I am working with more information and playing the stats game between transplant versus no transplant. So my situation is a bit more developed than yours. 

42 is damned young. I don't know what to say to that. 

But from my readings and studies in sociology, I think loneliness is where the real pain is. So do nurture your familial (and friendship) relationships. But don't deny yourself some quiet alone time either.

Sermon over,

e

There is pulmonary fibrosis in a variety of types. IPF is "idiopathic" pulmonary fibrosis, The idiopathic means the cause is not understood so a cure is not available. There is new stuff on it but essentially that's the deal. 

Known time? Do you mean how much time remaining for you? If that's what you are talking about please don't freak. You still have more to learn about your diagnosis. Also, I have followed some of the research on current meds and those being developed and there is impressive progress. There is the site Pulmonary Fibrosis News which is really up to date on research and studies. But I still say slow down a bit until things are more clear. BTW, this is the second time I have heard the word "gobsmacked" in a week, having not heard or read it in a zillion years. Great word! Best I can find is first use on British TV in 1959. Definitely the "word of the day".  

es