Pulmonary fibrosis survival time

[DeeArt]

I just read on the NHS choices website that survival times for people diagnosed with Pulmonary fibrosis is 2 - 5 yrs - does anyone know if that is with or without medication please?

[Hidden]

The page does also say though that "It is impossible to predict an individual’s expected survival rate." The problem with trying to give an average is that the outcomes vary so much and, in my opinion, pulling these snippets out is likely to cause undue worry. Remember, there are lies, damned lies and statistics! Your best bet is to either speak to your doctor or ring the BLF helpline.

[DeeArt in reply to Hidden]

Thank you very much for you replay and advice. My doctor has been skirting around the issue and Im really confused. Didn't know if I should empty my savings account and go on one last trip before its impossible to get around.

[Hidden in reply to DeeArt]

He is maybe skirting around it because he has no answer. As Mark says below, nobody can predict life expentancy for anyone with a lung condition. I suggest you ring the BLF (03000 030 555, Mon - Fri, 10 - 6). x

[Hidden]

Hi

No -one can predict life expectancy for anyone with a lung condition. As many have said before - and will come along soon - it all depends on how advance the condition is - and then every condition affects everyone differently etc.

So if you do want to talk through your diagnosis with someone please call us on the Helpline - 03000 030 555 - and have a chat with one of the nurses.

Mark

[DeeArt in reply to Hidden]

Hi Mark,

Thanks for answering. Im on a lot of medication and I have been told I would not survive without it. Im getting worse and have been issued oxygen cause I struggle to walk up a slight gradient. I just wanted to know whats in store.

Thanks again,

[Hidden in reply to DeeArt]

Please give us a call.

Mark

[HEAVYBREATHER]

There are many of us in this group and on the various other internet chatrooms and facebook pages who have survived much longer than this figure. It is important to remember that the figure quoted is based on diagnosis which can happen at any time. Some people have no symptoms when they are diagnosed, others are quite poorly. Some are as young as in their 20s while others are in their 80s. Some take a positive approach to their illness and are determined to prove the statisticians wrong while others just give in to it.

And the statisticians merely quote the median life expectancy. That is not the average, nor is it the maximum. it merely means than 50% of the patients die in that time. but at the same tie it means that 50% live.

I was diagnosed in 2006, but I suspect that I had symptoms as far back as 2000 or even earlier. I still go ballroom dancing. I still walk about 2 miles every day in about 40 minutes, which I am told is normal walking speed. I have a portable oxygen concentrator but that is really to help me with the times when I really exert myself. I have not had any treatment and the only treatment that is currently approved by NICE is Pirfenidone. There are plenty of people who have taken other treatments and say that they have helped, but clinical trials do not back up those claims, and in many cases show that the treatment is detrimental.

hope this helps

[DeeArt in reply to HEAVYBREATHER]

It really helps, thank you.

[Hidden]

I have chronic bronchitis emphysema& pulmonary fibrosis just seen consultant today and asked that question. he looked at heart scan 4years ago and said it was well shown on the ct scan iasked him how long I had he told its not like cancer no one can tell but he is changing all meds as the ones I am on are not making any difference there is a new alternative to tioprim but is not avaible in Scotland yet but I will receive it when is here.i am 58 he does not want to see me for six months so hope this is good news

[DeeArt in reply to Hidden]

Thanks for the reply, I hope its good news for you too.

[Hidden]

Good answer.

[phillipehenry]

I was told 2 to 4 yrs 14yrs ago. Am I lucky or was I diagnosed incorrectly? Whatever, I certainly have severely damaged lungs. Just stay positive.

[joke]

you know phillipehenry thanks for that you ve just cheered me up no end

[Lizzy1898]

Hullto DeeArt, I am newly diagnosed with this as well, there is a new treatment which I am hoping to be able to be prescribed when I go back to my Specialist in December. I am sorry that I can't answer your question, it is so frightening , I know how you are feeling. I have had a biopsy of my lung done on the 12th Sep, still a bit sore from that but getting there, Trying to walk half an hour a day in lots of ten minutes, and wean myself off the pain killers slowly.

One day at the time it is . All the best