Cryptogenic organising pneumonia

[Deaks]

Hello. I'm new on here. Just been told I got cop after nasty illness and a week in hospital. Still off work four weeks later and still tired and breathless. When will I feel better. Also steroids being reduced and cough returning

[Hidden]

Hi deaks, welcome, sorry Uve been given this diagnosis, but I can't answer when ull feel better, but hopefully with the correct medication a few tweaks with ur life style

Ie: quit smoking

Eat healthy ( but the odd goodies won't hurt )

Exercise

Hopefully Things will be improve for u.

And now Uve joined, u always have us lot for help, advice, a giggle and a huge shoulder if u need it

Xx Sonia xx

[Deaks in reply to Hidden]

Hi. The most frustrating part is I don't smoke and have always held an active job. I think I'm more worried that it be long term. They not sure how I've got it. Started with bad cough. Just been thinking they had some work done at the store I work at. They wants the floor levelling and some contractors came out and put something down wet it it smelt the. Dried into a dust that is still being swept up now. I just hope it's not that. I will have to mention it to consultant. Thanks for reply. Xx

[agammyt in reply to Deaks]

We had an extension in our bungalow with the work going on for months instead of weeks which we had been told. I was ingesting building dust for at least two months, started coughing up blood and eventually was admitted into hospital with pneumonia and sepsis. Inhaling fine dust particles is not good for anyone's lungs but can be very debilitating for anyone with a lung condition. Wear a mask if you have to work in a dusty environment in future..

[Katinka46]

Evening Deaks, I believe that COP (used to known as BOOP, bronchiolitis obliterans organising pneumonia) is responsive to medications. But I think it can take a while to clear. I think you should find out about the dust at work. How was it diagnosed? Sorry to interrogate you but I am very interested in your condition. I believe it is a small airway disease, (small airway NOT small disease) but the last time I said that on this forum I got my head snapped off. Please let us know how things go.

All the best

K xx

[Deaks in reply to Katinka46]

Thanks for reply. I had to have a ct scan and it was diagnosed from that. I'm gonna mention the dust. I'd gradually got more ill and was then admitted to hospital for a week. Just so tired and now the cough seems to be creeping back. I'm back at consultant on 10 th March. I thought I'd be back at work by now. Xx

[wini44]

feel better soon xxx

[SquirrelsHolt]

Welcome ! I've read your "hello" and its almost my bed time and I really do need that beauty sleep. We will no doubt chat over the days ,so til then.

[Salfordlass]

Hello

I too have the same disease. COP. I was dx in April 2014 was started on very high dose of steroids and was off work for months. Don't mean to sound negative but this disease does tend in most people to take a long time to resolve. The avarage recovery time is 6/9 months.

I hope you recover well

Take care

Best wishes

Sheila

[Deaks in reply to Salfordlass]

Hello. What did the doctors say. Have you got lasting damage. Just feel useless at the minute. How long was you off work. Xx

[Salfordlass]

Hi

I am not sure re lasting damage I suspect there is some? I am due to have a CT scan in the next month or so I guess I will know more when I get the results.

I was off work from April till January but I had problems with my eyes (due to high does of steroids) and had it not been for my eye problems I could have gone back to work around October. I have since had 2 relapses which apparently are common.

I hope you are well

Whereabouts in the UK are you? I am in Manchester

Sheila

[Deaks in reply to Salfordlass]

I'm in Manchester. I just thought I'd be ok now. I hope your ok. That's bad with your eyes. They're weaning me off them this week. I've felt light headed and heavy chested and breathless. Take care. Xx

[Leeaza]

I was diagnosed 8/5. Same story. Can't work or do much of anything. Steroids have causes high blood sugars and I'm now on insulin and metformin. I feel worse instead of better. I have repeat ct first Oct and hopefully the mass has gotten smaller. I have your exact question. When? The doctors really don't know. This is so rare and everybody is different. I'm the only one in single household who works so I'm without a n y money coming in and a lot going out. That's my biggest worry now.