PULMONARY FIBROSIS

[DanceQueen]

I have COPD with pulmonary fibrosis and have been told my PF is progressing .My consultant is arranging another scan as its 2 years since the last one.So i have been doing research on line and have found life expectancy for PF to be 5 years after diagnosis,Well thats proper scared me i now feel really depressed ....Any help or advice out there please ......

[sassy59]

Hi DanceQueen, please don’t research online as you’ll only get the very worst scenario. Hoping you get your scan soon as your consultant can see the results and talk it through with you.

I’m sure you’ll get more replies soon. Take care. Xxxxx

[DanceQueen in reply to sassy59]

thankyou

[Damon1864 Volunteer]

Please don't research on line Sassy is right about worst case scenario. Hope you get your scan very soon then you will be able to have a good chat with your consultant, at least you will get the truth . Have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx

[DanceQueen in reply to Damon1864]

thankyou

[Suzie42]

That's what I was told when I was diagnosed with IPF 3-5 yrs, but with drugs longer. Saying that on this forum some people are 10 years after diagnosis. I know it's a blow, but you need a good outlook and keep as healthy and active as you can. Mind over matter is what's needed. Good luck xx

[DanceQueen in reply to Suzie42]

thanks for your good advice

[Suzie42 in reply to DanceQueen]

Thanks but mine is IPF, I dont know which one you have

[2greys]

Beware there is a big difference between Non-Idiopathic Pulmonary Fibrosis and IPF (Idiopathic Pulmonary Fibrosis), the website that you have looked at that gave life expectancy to be 5 years after diagnosis was probably for a diagnosis of IPF (which is still inaccurate in any case).

pulmonaryfibrosismd.com/non...

[DanceQueen in reply to 2greys]

thank you for your reply

[tomc]

Yes! a big one. STAY AEAY FROM DOCTOR GOOGLE!!.There are a lot of people who are well past 5 years and still knocking about.

Stop worrying yourself about when or If, JUST LIVE AND LOVE YOUR NEAREST AND DEAREST, And living a long life with them

❤️

[DanceQueen in reply to tomc]

Such good advice ...thanks a million

[Carnival567]

That 5 years is very out of date, as many people live a normal lifespan. The best advice is to keep doing what you normally do and don’t believe everything you read on the web!

[DanceQueen in reply to Carnival567]

Your reply came just as I was feeling really low...and it made me smile. ..thankyou ....I will keep away from Google and try to live one day at a time

[Carnival567 in reply to DanceQueen]

Glad to have been of help!

[Aingeful]

I wa diagnosed with Idiopathic pulmonary fibrosis three years ago and I was told that idiopathic meant cause unknown. The first thing my consultant warned me about was the internet! He told me to disregard it as all cases are different. However, this is easier said than done?? Like you, I read all the depressing stuff. I try and focus on the things I can still do rather than the things I cant do. However,I know how you feel and sympathise.

[DanceQueen in reply to Aingeful]

Thanks so much for taking the time to reply ...I have been told to stay away from Google by lots of people who are right... ..I contacted British Lung Foundation yesterday and they were very helpful