NEW Cryptogenic Organizing Pneumonia sufferer

Hi Folks,

Just been diagnosed as having this condition after repeat chest infections and persistent cough for about 3 years. I had a crisis where my O2 sat was at high 60's just walking a few paces to the loo and high 70's early 80's whilst resting and was admitted to NNUH hospital in Norwich.

After not improving for some time and stuck on 8L/min O2 whilst resting they started me on 60mg steroids and, over the next three weeks, improved to where I am back home again. Currently on 40mg for the next month or so and in outpatient care but very hopeful.

Any fellow sufferers available to shed light on their experiences? Is it fully reversible and can I expect full recovery?

Thanks,

Mick Force

[Katinka46]

Welcome to this forum, Mick. And to the rare small airways disease Zebra club, (small airways but not small disease). I thought that COP was reversible, and did respond to steroids but your doctors will be able to tell you more. COP used to be known as Bronchiolitis Obliterans Organising Pneumonia. But they changed the name so as not to confuse it with the condition I have which is Bronchiolitis Obliterans (AKA Obliterative Bronchiolitis which I favour, preferring to have OB rather than BO). I see that you are a Norfolk dumpling. Which is where I come from, but we have lived in Yorkshire for many decades. There are others here with COP and hopefully they will respond with their own experiences and help,

All the best

K

[Tricity125]

Hi. Ya. Wow. That sounds like it's from Bladerunner. But. Also. Really serious. I've had. A bad lung A1AD. Now 11 yrs. my advice. Seek Best advice. Possiable. But. Lungs are so complex. And. Exposed to. Outside. Pressure. Germs. Temps so. Go. Royal Brompton Heart & lung. Hos. Or. If. They see. You. And this I say. See you it took me 6 yrs to get. At said. Hos so. You might want to remember that. When or if you decide what you are going to do. Norwich. Are. Good. Do they have a Chest department. ??? There other. Hos. Harefield but usually you start with. Brompton Not sure about. Cambridge. Papworth I think. Well they. Do hearts so must be specialists in lungs. Sure it s in Cambridge. That's maybe. Your best bet. Nearer to the flats. My old mum. Moved up. Norfolk. Near coast. And. I loved it. That. Coast line around north Norfolk. Beautiful so. Quite. Really cool. Well. Bless her. Gone now. But. Never forgotten Bless you. Take care. PJ

[santisuk in reply to Tricity125]

Papworth Hospital is15 miles west of Cambridge, but moving to Addenbrookes in the south of Cambridge city this Autumn; finally the move is confirmed, I was told 10 days ago when I was there for an annual review/monitoring.

Papworth has a lung defence team with rare lung disease capability and would be the obvious place to go for an East Anglian if you don't want to go as far as Royal Brompton in London. Probably no 2 pulmo centre in the UK in addition to world-renowned heart specialisms (actually the started life with lungs as a TB specialist hospital early last century and were the first in Europe to do a combined heart and lung transplant I think).

I very much appreciated how they charted the diagnosis of my lung health through quite rare malt lung lymphoma to uncommon bronchiectasis by using a team-based approach where unusual cases are discussed in weekly team meetings of multi specialists.

The admin side can be a bit dodgy if you are a private patient (OP's disease suggests he should have little trouble getting an NHS referral) but the experience, capability and multi-functional facilities there make it highly recommended in my book.