I have just been diagnosed with pulmonary fibrosis (yesterday) and am now waiting for a referral to the Royal Brompton Hospital. I just...

[needinfo]

....I just read on an nhs site an article regarding ipf and it said that survival is usually 2-5 years from diagnosis..???? this has terrified me and I need to know if this is generally true. I don't think mine is at a very serious stage even though I have had shortness of breath for years. I can still walk very fast and for quite a long time as long as the surface is flat. Stairs and hills are more difficult but I can certainly still do it and I work 5 days a week in a normal office job. I swim every week and walk for about a total of an hour+ every day and I eat very healthily, no longer smoke and don't drink. It would be very comforting to be able to speak to somebody in a similar position and find out how they are coping and what treatment options have been offered to them.

[Hidden]

So sorry for your recent diagnosis needinfo, referral to royal brompton is a good thing. I am so glad to hear you don't think you are at a very serious stage and you are still very active, that is a good thing. You will benefit from keeping active and looking after yourself as you are already doing. You may want to ring the BLF helpline for an information pack (click red balloon top right for contact details).

Check out this NHS Choices page (with video - pulmonary rehabilitation is a course equally good for many lung patients, you may already be beyond the exercise side of this course but you may benefit from the educational side which will help you manage your symptoms and be aware of things you can do to help avoid infections):

nhs.uk/Conditions/pulmonary...

All good wishes to you and welcome.

BC

[needinfo in reply to Hidden]

Thank you BC for your helpful reply. It was actually that same nhs site that says 2-5 years from diagnosis survival rate..! I am still very confused about this statement. I feel like I have probably been suffering with this condition for many years but it quite simply has not progressed much and has not been diagnosed up until now. I suppose that's why I was so shocked to read this. I feel at the moment like... well, I've been living with this for at least 10 years so far and apart from stopping me running marathons, I live a mostly normal life. So to suddenly read this 2-5 years thing is very shocking and scary. I suppose I will be a lot clearer and feel a lot better once I have been to the Royal Brompton and asked gazillions of questions! I will also definitely order the info pack, thanks for that.

[stilltruckin]

This site goes into detail regarding factors affecting life expectancy . . . buzzle.com/articles/pulmona...

[needinfo in reply to stilltruckin]

Thanks for the additional info. Pretty gloomy

[Keep_Calm in reply to needinfo]

I'm not touching that link with a barge pole.

[mattcass]

Hi Needinfo, You did the same as me and looked at the prognosis and it scared me also in fact it terrified me as i have RA as well which caused he most damage to my lungs this time last year, Last week there was someone who posted that he had been diagnosed with IPF 12 years ago and wanted to know how much longer could he exspect to have it as they say how long is the peiceof string everyone and every body is different.I concentrate on excersising and walking 9 months ago i could not walk 5 meters now when i am painfree from my RA i can walk 3 or 4 miles there are a lot of people with IPF who are fighting it just by doing a little bit more than the day before, Good Luck.Mattcass

[needinfo in reply to mattcass]

Thanks so much Matt. The internet is a wonderful thing in so many ways but it sure can scare the poop out of you if you focus and obsess on the wrong stuff! I have decided to be ultra-positive and beat this little beastie. Good luck to you too and so glad we have the support structures around us for help like this. Bless x

[tigershay1 in reply to mattcass]

Hi ive just been reading your reply hope you dont mind me asking but i waz diagnosed last year with rheumatoid arthritis im currently on sulfasalazine and naproxen plus monthly steroid injections. At same time i was referred to chest consultant as the last four winters id been struck by chest probs ...which currently im ill eith now but luckily going to different hospital for further tests in a week. Im interested that you said your lung problems stemmed from your rheumy as ive been saying this but was completely dismissed. Could you if you dont mind givecme some information as id like to be prepared to say this to new consultant . I feel so let down as last year if hed done his job i would have been on plan this year instead of being so ill . Very much appretiate anything you can help with . Thank you Judith x

[Keep_Calm in reply to mattcass]

I have RA as well as perhaps PF. Just found out a few weeks ago. Waiting for more tests etc. I became so frightened from googling that I stopped googling and have turned to forums such as this

[teaky-19]

I am terminal was given 6 months to live 3months ago I have copd and ipf it was seen on a scan 6 years ago the disease can not be cured and treatment is no good in my case I was only diagnosed about 18 months ago the nhs site is about right it is also on blf site.the time scale is 2 to 5 years.there are no set timetable with ipf every one is different don't worry your self sick you will only make yourself worse.

[needinfo in reply to teaky-19]

Hello Teaky. So sorry to read about your case and thank you for taking the time and effort to reply to my post. I have decided to remain as positive as I possibly can - that is all we can do after all. The very best of luck to you and heaps of blessings x

[Hidden]

Hi there Needinfo! I wrote a post on my experiences at Royal Brompton that you may find useful? I think you can still find it if you use this link but I can't promise because I posted it about 5 months ago.

healthunlocked.com/blf/post...

Like you I was scared when I first read some of the stuff on the internet because you always seem to only see the "worst" bits. The thing to remember is figures given are averages so some of us might last 20 years or more! We might fall under a bus tomorrow! The most important thing is to keep as fit and well as you can and make sure you see the specialists in IPF (unfortunately there aren't enough of those). If you want anymore useful links or just a chat pm (personal message) me on here if you like.

[needinfo in reply to Hidden]

Hi mapal. Thank you so much for taking the time to reply and sending me the link. I haven't tried it yet but will check it out later. So glad we have these support structures available to use now thanks to the internet - it means a lot. Thanks too for your great advice - I will certainly try to remain as positive as I possibly can I have a fab partner and great family around me too which helps enormously. Counting my blessings x

[pedr]

Hi Needinfo,sorry to hear about your recent diagnosis.I've got RA and IPF,was diagnosed with IPF in about 2002,worked fulltime untill Febuary 2013 then had to retire with ill health.Have been on oxygen 24/7 since March but still try and keep as fit and active as i can.Went to Thailand last June with my wife and with a bit of luck will be going again in 2 weeks time.Keeep positive and do as much as you can for as long as you can.

Allthe best.

Pedr.

[out-for-lunch]

don't get cold, don't breath-in freezing air, keep away from all smoke, gentle exercise as much as possible & most importantly, keep a positive outlook on life.

Royal Brompton ..... best place possible IMHO - parking's a right pain, but they have world-class expertise up there.

Good luck

[maggie44]

needforinfo

I was diagnosed with pulmonary fibrosis in January 2010 by the respiratory consultant at my local hospital, having been referred by my Rheumatology consultant. I have an auto-immune illness (Sjogren's syndrome) and it was recognised that the Sjogren's was responsible for the pulmonary fibrosis. As the cause is known it is not diagnosed as Ideopathic pulmonary fibrosis but in my case called NSIP -'Non specific interstitial pneumonitis' or ILD ( a term for a group of this type of disease).The outcome appears to be different for IPF as opposed to PF or some ILD. When I asked about prognosis when I was diagnosed at my local hospital I was told I probably had a 'few' years. However I was treated to try to damp down my immune system in order to slow the progress of the fibrosis which was pretty effective for some time. I was referred to the Royal Brompton in Feb 2012 at my request having seen reports of research and trials going on there. My rheumatologist was happy to do that and I continue to be looked after by him locally; the respiratory team at RB and in the last 18 months by the Pulmonary Hypertension team at RB ( my immune system was also responsible for the development of this devastating disease). Again RB is one of only 9 specialist centres who are able to treat PH.

I think we have to accept that people 'tolerate' and experience the same illness in many different ways and therefore the prognosis will be vey different depending on a whole range of factors. For myself I believe in keeping as healthy as I can, seeking the best treatment I can get, taking advice from experts and embracing any help they offer and then just hoping!!

You are certainly going to the best hospital for your condition and can be assured of the best care available by lovely professionals. You will be amazed at the range of tests they can carry out in a very short time to inform their treatment. As your symptoms are not too bad yet, that must be a very positive start.

I certainly, like many others, went through a range of emotions when I was first diagnosed- fear, anger, disbelief.... Now I think I would say I have largely come to terms with my condition and to some extent feel a bit fatalistic (although when I first wake up in the morning I still think to myself what I will do today before reality kicks in) . However I will strive to be the best I can be but recognise my limitations, seek as much medical help as I can and be as positive as I can (on good days). I feel so lucky to still be here, to have celebrated my 50th wedding anniversary in the summer, seen my eldest grandson start secondary school- neither of which I expected to experience. At Christmas I felt blessed to have all my lovely family around me on Boxing Day. I am also making plans for next Xmas and wonder if I will see my 8 year old grandson go to secondary and.......

Best of luck

Maggie

[terence2]

Hi needinfo,my twin lasted 13 years from diagnosis,I am 3 years in from diagnosis,but may have the chance of being given "Pirfenidone"-not a cure,but halts the progress of P.FAsk your consultant about it-good luck-terence2

[dacour]

do not take prednisone or other steroid derivetive. low dose daily antibiotic 250 mg. my wife,s ipf worsened because of predn.,also ruined her pancreas&liver. good luck , dacour

[joke]

yes scared me too. one of the reasons I joined this site...but hey you sound great ..as Blakey says keep up the exercise Its the route I took october last could only manage 200 on peakflow now nudging the 400 mark...walk about 6 klms a day swim two and some weeks three times a week now doing light weights and force myself to take the stairs rather than the lift....I read 5 to 7 years from diagnosis but bet there are people around going well at 10 would be great if we could do a survey

[Jean1964]

Hi

My dad is 69 and was diognosed with this over a year ago.he is other wise healthy, he as days where he needs oxygen and cant move around much, he walks a lot most everyday when he feels good, he had check ups and been told that his lungs are scared but they have not changed or got worse, they say the excersise is doing him good...please keep doing what you can in the way of excersise...my dad was told the prognoses was 2/5 years but this depends on each person...try not to worry about this till you have been to hospital. My mother has COPD also..she still smokes.i don't know much about this or how long life expectancys?

[D_avid1954]

Hi You seem to be in a simialr position to me.I have was diagnosed with IPF last Oct have seen some specialists and undertaken various tests but am not on any medication and seem to have been put on hold. I have been referred to other specialist but haven't heard anything for two months which is a long time when you have this problem. I don't think I have the classic symptoms though and wonder if you are the same. I am not breathless work full time.but have a regular cough and an awful lot ofmucus all the time. I am still competing in walking races and ironically my times have got better recently.

[heho]

I feel for you but well done for being so brave and keep on going. Royal Brompton is wonderful. Can not fault the treatment. I suffer from not being able to breath and on oxygen but panic so much and very afraid all the time. It takes time to adjust. to not being able to do what one would like in everyday living. Take care and good luck.