Lung trouble - how can I recover?

[magso]

Hi! I am looking for advice from other sufferers from lung disease as I feel in limbo at present!
I spent a couple of weeks in hospital nearly 3 months ago - on oxygen for most of it. I had been deteriorating over months and got to the stage where I could barely walk or talk and was coughing all night. I had of course seen the Gp several times ( I felt like I had a chest infection but they kept saying my chest was clear)- and it was only when a different dr checked my blood oxygen ( it was very low) that they discovered something really was wrong - and sent for an ambulance.
Anyway I had lots of tests in hospital - xrays, HRCT, bloods etc and 10 days later ( I was too ill at first) bronchoscopy (collasped) so may need repeating. HRCT confirmed all not to be well (ground glass effect), all infection tests were negative but IGe was high ANA +. I was allowed home once I could keep sats above 92 at rest, but was still exhausted. I went for lung function tests and repeat HRCT but am still waiting FU with consultant so do not know the results.(have chased several times)
Well I still do not know what is/was wrong and I suspect they don't either. . Gp certainly doesn't. Inflammation, brochietasis and organising pneumonia have been mentioned in passing IYKWIM. I am mildly asthmatic but this is different.

I want to get well! I eat well. I have bought a nebuliser (cheapest I could find) to help with the cough. I do as much as I can to get fit but this is very little - just carrying washing upstairs is likely to make me faint and i can only manage a couple of hours at work. Also very stiff and achy since coming off the prednisolone.
I read about a flutter device - do you think this would help?and have bought an oxometer (again cheapest I can find!) but feel abandoned by the system!
Any ideas of how to get better?

A flutter device may help if you have secretions to clear, but not to help you build up your exercise tolerance.

How are you generally? Are you eating and drinking well? What about your weight? Ar you sleeping?

What are you putting in your nebuliser? You should have been provided with one if you need it.

Our hospital run a pulmonary rehabilitation course which sounds like it would be perfect for you - it's 18 sessions (3 x 2 hour sessions a week for 6 weeks) and includes education from Drs, physios, OT's and dietitians, exercise under the guidance of the specialist physio and management techniques of how to cope with breathlessness, stress etc.

Can you ask if there is something similar in your area?

Thanks Iwish! Yes it does sound perfect so I will make enquiries. I think some physio and diet advice would be helpful.
I am using saline in my nebuliser - I asked my gp to prescribe some as this had been helpful in hospital and it is. NHS does not supply nebulisers in england so I guess not flutters either. I bought a lttle portable nebuliser as it will still be useful if I need a posher model in the future! I use steriod sprays religeously now - but am fairly new to them. I have a pf meter given to me in hospital - and watch that now.
I used to be ( very) fit before dc, but now need lots of rest and find it harder than usual to wake and get up now . Can low O2 levels cause pins and needles in hands and feet, balance problems and memory trouble? Gosh I sound like an elderly lady!