I am just couple of months shy of 70, and have had asthma since infancy. The consequence of repeated infections, more frequently in winter, this winter, no different. After getting rid of infection, breathing still not back to normal. Had XRays and bloods. 12th March, was advised had Pulmonary Fibrosis. WOOPS. Referred to Consultant, just as Covid19 was spreading. Was advised required CT scan, but cannot be done, as Hospital in shut down, as has had over 100 Covid 19 deaths.
Kev.
Hello l8tories, so sorry to hear about your diagnosis. I really hope you can get your scan soon as it’s important. Can you get in touch with your consultant and see where you stand now.
Thinking of you. Xxxx
I am surprised that you have been given a diagnosis of pulmonary fibrosis ( by your GP ?) before you have seen a consultant or had a ct scan. GPs are not qualified to make such complex diagnoses.There are other conditions which give the symptoms that you describe. Amongst them is bronchiectasis, which often develops from lifelong asthma but is often missed or misdiagnosed.
Do ensure that the consultant whom you are due to see is a bronchiectasis specialist. They are highly qualified in all lung conditions but also knowledgable and experienced in diagnosing bronch. Something which most general respiratory consultants are not fully trained or experienced in. If not, find one in your area and insist on the referral being changed.
If you have developed bronch it is very manageable by yourself and with the right antibiotic therapy, about which the specialist will advise your GP. If you have developed pulmonary fibrosis these highly qualified specialists will also be able to manage that. Do not accept anything less than the best.
Good luck.
Great to see you back Littlepom. I hope you are well. x
Yes thanks. I am leaving others to talk about covid related issues and juat popping in where I hope that I can help. I hope that you are ok too.
Apart from being bored out of my skull I am thanks. x
Please don’t assume you have a terminal diagnosis until you have had your ct scan which will give a much more accurate diagnosis. I hope you don’t have to wait long for your scan.
Good luck and please let us know how you get on.
Love cx
This is an awful time for you and you probably thinking the worse our GP told My husband he was most likely going to need a pacemaker he was petrified waiting for appt with cardiologist. He had harmless etopic heart beats a course of beta blockers end of . Take care and as someone said how can you be given a diagnosis without a ct scan xxx
Sorry to read that your husband was given such cause for worry by your GP but glad to know the the problem was nothing serious when he was seen by the cardiologist.
I agree christina1947 . xx 👍
Welcome! I know almost nothing about pulmonary fibrosis but agree that you need a ct scan as soon as that is possible. In the meantime your breathing could maybe be helped with a medication review? You dont say what medication you are on, or how much.
Is the 250/300 peak flow you mention is a rapid decline? It doesnt sound bad to me after a lifetime of asthma. I became asthmatic in my 20s and my peak flow has been around 250/300 for the last 15 years at least so I'd say that that in itself is not a reason for concern. At the risk of sounding trite, life is a terminal diagnosis. Many of us live years and years with lung conditions and I agree with LittlePom that it's strange your GP would lumber you with a PF diagnosis without proper investigation.
I do hope you manage to get a CT scan asap. Good luck!
HI and welcome,
You have been given some great advice by some of our experienced members. I'm sorry that the coronavirus means a delay to further investigations, and very sorry that your local hospital has had such difficulties. I hope that you are able to get a scan and that you are also able to see a specialist in the near future.
Hello and welcome 😊
Hello Kev, 👋
I would not take what has been told to you as gospel until you have had tests and been seen by a specialist to confirm it. I think most of us on this site have been told at one time or another our days are numbered , but here we are still here and still enjoying life as best we can. When things calm down I hope you can have your scan and be seen by a lung consultant. Lung diseases are not easy to diagnose but hang in there and do let us know things go.
Very best wishes to you,
Cas xx 🍀🌿
Hi, I was first diagnosed with pulmonary fibrosis 11 years ago - don’t google it as a lot of information including life expectancy is out of date. It is more a progressive disease than a terminal disease! Good luck
Hi there. I have life long asthma, repeated infections leading to COPD, now Bronchiectasis, have never smoked. My Peak flow is never above 300, and often 200. I’ve been told I’m end stage COPD, but I choose to ignore it as no one knows how different peoples disease will affect them! I can’t do much, I’m on 02 as needed, but still enjoy what I can when I can, however limited that may be! I’m on antibiotics all the time, which help. Please try to stay as active as you can as that will help you use oxygen more effectively. Let’s prove the experts wrong?! 🥰
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