So I’ve just been told during my current hospital stay that I have Pulmonary Fibrosis, currently at its mild stage. This is on top of the diagnosis of severe COPD - Emphysema and Chronic Bronchitis, as well as a potential issue on the right side of my heart.
Can anyone give me any honest information on PF? Dr Google is kinda scary 🤔 so I prefer to avoid it
Thanks all 😎
Hi Brian, there’s some good info on the BLF site if you want to know about PF.
You’ve got it all going on at the moment and I’m thinking of you. Xxxxx
Thank you. Wish I was the only one but sadly, far too many of us have been in my situation, you and Pete included. Take care xx
You too Brian xxx
Whatever it is you’ll get through it!
Sorry I have no help or advice to offer but just wanted to say hang in there. And I’m sure there’ll be plenty of people with lots of useful things to say, there’s just such a wealth of knowledge and support here 👍 Thinking of you.
2 types of Pf Brain,straightforward fibrosis and scarring of the lungs from a know source and IPF which is idiopathic meaning it's reason or source is undiagnosed.Both are progressive diseases but progression in lots of sufferers can be drastically slowed with the use of 2 drugs quote two drugs are FDA-approved for treatment of idiopathic pulmonary fibrosis (IPF), which is the most common form of PF. These include nintedanib (Ofev®) and pirfenidone (Esbriet®).
Trials have recently been completed using both together with some success noted.
Googling will give you a prognosis of 1-5 yrs,ignore that as there are many people who have had PF for a good many years and are still living normal lives with the progression very much kept at bay.
Sorry if all this is a bit blunt but you wanted facts and i have given you the basics.My wife had undiagnosed IPF and was never treated properly due to her having been severely affected by a previous stroke.
Regards Ski's and Scruff's x
Thank you. It’s IPF. Only been diagnosed with it today so it’s all a bit new, I don’t take much notice of google. I find people like yourself on this forum and the BLF far more useful and informative. Really appreciate your info 😎
Welcome to our world Brian.
Your diagnosis is scary and will worry you senseless if you let it.
A mate of mine (61) has IPF, I'm on a different disease progression to him. Although my prognosis (< 10 years - 10 years ago) is better than his, he is actually much more "well" than I am and able to work. He is on the Perfenidone protocol.
Bottom line is to ignore your prognosis, except in the most general terms, and live your life as fully and as well as you can.
Look after yourself, and don't be afraid to say to anyone "sorry I'm not up for that today"
Most GP's don't have time to learn about your disease, so do your own research. Google can be scary but the info is better than blind worry - become your own expert and build good relations with your consultant team. The team secretary is a vital link to staying in touch with the consultant.
Sounds like Skis (with help from Scruffy) has answered your question.
Just wanted to say sorry that you've been diagnosed with something else on top of the usual. Take care and best wishes
Corin
Hi Brian, sorry to hear of your diagnosis, some YouTube info here which might be easier than reading. You will need a fair bit of time to watch them 2:45 & 1:00 hours long respectively.
Hi Brian, the BLF also have nurses you can talk to over the telephone via the helpline - may be worth it as they will give you straight forward answers. So sorry that you're going through all of this my lovely and thinking of you xx
Hi
I have PF caused by Mixed Connective Tissue Disease, diagnosed 10 years ago. There are two charities that are very informative that you may want to have a look at their websites. Action for Pulmonary Fibrosis and the Pulmonary Fibrosis Trust. Hope you find some answers.
Hi Brian, so sorry to hear you have IPF on top of your other illnesses. My husband was diagnosed with IPF in 2015 after being misdiagnosed with COPD in 2012. He had been having one chest infection after another when his GP decided to to investigate further. Please don't Google as it will just scare you senseless. My husband has been taking Mycophenolate 3xtwice a day plus steroids 1x 5mg for over a year and it seems to be keeping it stable, fingers and toes crossed. He uses ambulatory oxygen and we had a stairlift fitted and changed the bath for a shower. He tries to keep fit by doing gentle exercises in the house. Make sure your GP prescribes you a rescue pack of antibiotics, he takes them straight away if he thinks he has a chest infection. My husband served in the Forces for 22yrs and was always such a fit strong man so it's heartbreaking to see him this way. Keep strong and fight this horrendous disease. If there is anything you want to ask please feel free to do so. Take care ❤️
Hi Brian I was diagnosed with IPF two years ago after what I thought was a stubborn chest infection. Like you,I Googled and practically felt I had to put my affairs in order, that year when I went to the garden centre I would only buy stuff in flower in case I didn't live to see it grow!! 
I was sent down to Liverpool to talk about the drugs trail but refused them as I react badly to medication and didn't want the side effects.I decided to try and keep myself as healthy as possible in the usual ways. I also deal with painful osteo arthritis on a daily basis. Two years on,I am "stable" and just get on with it on a day to day basis. I cough a lot which can be embarrassing as folk think they are going to catch something,my throat also feels clogged up with mucus often. There isn't a lot I can do about this but steam,cough sweets and the odd hot toddy work wonders. For the osteo arthritis I love Tiger Balm. I get really down some days but still can enjoy my main hobbies. Good Luck with it! We are in it together! Sheila
Hi Brian, my dad is still waiting for his actual diagnosis but all signs are pointing to IPF, we have got another 10 days waiting yet. He was going to you tube for all his information and is currently convinced he has not got long. I have pointed him in this direction because although the prognosis still isnt great the advice and support on here is so much better.
I am so sorry that you have something else now to contend with but hopefully if nothing else the support on here will help you.
Sending healthy hugs xx
Hi my husband has IPF. He’s had it for last 5 years and apart from a cough is still quite well and still works at 74 ( we have a construction company )When his cough gets two trouble some doctor gives him a stronger inhaler and he takes his antibiotics. His consultant says he hasn’t deterated as quick as she expected and his lung function is good his oxygen level is 94. He took statins for 10 years and it caused crystals that look like broken glass in his lungs. When he stopped taking statins they went but left him with scarred lungs. He also worked in construction most of his life which hasn’t helped. He sees his consultant privately every 4 months and it’s well worth the money and he is scaned every 5-6 months. He should be ok for a another 3-5 years yet. He has never smoked which helps. I agree don’t goggle it no two people are the same. He says walking helps him as well. I hope this will be helpful and I wish you well.
Hi Brian - There are branches of "Breathe Easy" near most cities/towns in the UK. I go to one near to where I live in Greater London and find it very helpful to chat to others with lung and respiratory conditions. The Consultant (and other medics) give lectures from time to time, and we are permitted to ask one personal question each, which he gives info/advice about. It is such a good place to be - a bit like Health Unlocked, but face to face is also very nice.
Take care, Marquerite X
Wow. So many excellent replies. Sorry I’ve taken so long to get back to you but this morning I was whisked off in a nee-naw back to hospital, unable to breathe and apparently suffering from a mucus plug in the airways. They put me on oxygen, gave me an angina spray, changed all my meds, tested my bloods again, did another ECG, sent in the chest nurse for a 30 minute consultation (she was brilliant) and I have just got home again - continue the pills and see how I am in a week
Regarding all your replies, I’m gonna have a nap and get my head together before trying to give your replies the answers they deserve
Thank you all, Brian 😘
I'm sorry about the diagnosis! I, however, would NOT, as people are saying, ignore your prognosis! My best friend was diagnosed with IPF the year after her sister was. They now understand what her mother died of almost 40 years ago. They are finding it can be genetic. The reason I say don't ignore prognosis of not living more than 5 years (many do live longer) is because you have to start doing your homework.
The only "cure" is a double lung transplant. Both my friend and her sister have now had one and are doing great!
First you need to start looking at hospitals. The University of San Francisco is #1 I believe. Her sister had her's in Phoenix.
Now, you do not automatically qualify. They are very protective of their organs and only give them to those who will be the best candidate and most responsible. You'll go through many physical tests so you might want to look at your overall health and start improving it now. You can find more info on websites.
They also give lungs on an as needed basis. In other words till you HAVE to have them. My friend spent a year or two on oxygen before she was desperate.
Her sister was on the waiting list at a Denver hospital but was never called. Check out which hospitals receive more organ donations. Someone told her to get on the Phoenix waiting list because Az had no helmet law so they get more in. Terrible I know but it is a fact. She then got a call within a month, I believe.
I want to end with how well both sisters are doing now!
Good luck, they do wonders now!
Hi Brian, I was first diagnosed about 6 years ago but am now nearing the end game ,good news is it’s not painful , just hard work I am on 2 Oxygen generators to link together providing up to 18 L per minute I’m virtually 98% bed ridden not in content but having to use bed pans because I don’t have the lung power to get the twenty feet to the bathroom and generate the air power to the muscles needed to pass motion,, about 18 months ago l started having treatment
At GUYS hospital as a out patient we’re after a few visits for tests etc I was prescribed some new wonder drug Ninteddanib witch had recently been released for use by a few of the top hospitals in the country ,the drug was known not to Cure the problem but believe the slowdown advance of a problem ,after about 6 month I was under the impression that it did not seem to be having the desired effect and the trouble I was having on the journey from the south cost to London using G4S patients transport some time up to 12 hours from collection to return home I had to inform Guys hospital that I would not be able to continue to keep appointments unless I had oxygen got the journey , that was the last I heard from Guys on more nintedenab it just stoped I then received a appointment letter from my local hospital lung clinic where the consultant was not authorised to prescribe NINTEDANIB so i was handed over to my own doctor to arrange for my care , neither the consultant at the local hospital or my own doctor both of them saying that they would make contact with Guys for reason that they dumped my without any consultantation or explanation I have heard no more from any body, So end my little story .if I can be of further assistance contact me,
David Orr,
By the way Brian I live in the UK APROX 80 miles from LONDON,
Pulmonary fibrosis 
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