CT Scan shows Pulmonary Fibrosis

Hi, try not to worry too much.  I was diagonised with NSIP 8 years ago and have pulmonary fibrosis.  I was 47 at the time and as you I was petrified, but as time has gone on, I have learned to cope with the breathlessness and keep as active as I can and take the advise of my Doctors.  There are alot of treatments out there not all work the same for everyone, but you just have to keep positive.

Hi katrina

Sorry to hear about your diagnosis.  And yes you are young!

I am 77 and in a similar position.  My lung fvolume is 105% of normal though I do get breathless on exertion.  I happen to have big lungs so I do not qualify for the new treatment.  Nintedanib which slows down the rate of progression by at least 50%. You need to be 80% or less to get it in the UK so I will probably never get it.

My consultant tells me I have more like 7 years without treatment.

Lets hope you get a good result from the Pulmonologist.  Look out for your FVC and "CO Gas transfer" reading and your O2 saturation level as well.

I am not all all afraid to die and not too worried about being disabled but I have changed my ideas about life.

All the best.

Hello! I was diagnosed nearly 3 years ago with the same symptoms you have.  I am now 81 years old.  The most important thing is to get onto the new drugs that are now effective, in particular Esbriet (also called Perfenidone) or nine tab.  j have been on Esbriet now for two and a half years.  The disease progresses slowly, but I am now stable, with very little change.  I have to have supplementary oxygen, and I am very fatigued and weak, but life is tolerable and I seem to have an indefinite future.  

My my feeling is that I might be suffering f m much more unpleasant things, and I might be run down by a car while out walking, so let's just look on the bright side.   The good news is that these new drugs do work.

best of luck!

neville

Hi Katrina,

2-5 years is the life expectancy if you have idiopathic pulmonary fibrosis. If your fibrosis is caused for instance by sarcoidosis, you can live a looooong and quite a good life if you take care of yourself.

In my opinion, you have to take care what you read online; many people say a lot of things that could make you worry for nothing. Worrying too much can put your body thorugh a lot of stress, which may worsen your overall health condition. Just wait to see your pneumologist; for sure he'll recommend the right drugs/life regime....

Good luck!

 

Dear Katrina,

I am so sorry to hear about your diagnosis.

My husband was 57 years old when he was diagnosed with IPF.

He was rushed into hospital on the 21st July 2016. The doctors weren't sure what the diognosis was, I think they were trying to remain positive. It was when the specialist arrived back from holiday 10 days later that the diagnosis was confirmed.

The doctors said that my husband had had IPF for some time, and that his body had adapted to it, and somehow that hid the symptoms.

Very sadly, my husband passed away on the 8th August 2016, I can't believe this has all happened in such a short time, from diagnosis he had a week or so left. I guess that if it had been caught ealrier then the symptoms could have been controlled, but the outcome of this disease, as fa as I have researched is not good.

Again, I am so sorry for your news.

 

Hi Katrina, I hope all went well with your doctor. I have only just joined this group , but my husband was diagnosed 12 years ago and it's only in the last year that he has needed oxygen. He is being treated with Nintendanib which helps to slow down the progression. So please don't put too much weight on what you read on the internet.