I have Hypersensitivity Pneumonitis - otherwise known as Extensic Allegic Alveolitis! Have been on Prednisolone for over 2 years now and gradually reduced down to 7.5mg daily since February this year. It has become clear that this dose doesn't help my condition as much as 15mg did. On that dose, I was managing quite well. So - since the reduction, I have had several Acute Phases which have happened during the night where my breathing becomes laboured. On two occasions I have taken myself to A&E where after a while, all readings are ok and they send me off home with instructions to increase the Prednisolone etc for a week.
I kind of got the feeling that there wasn't much to be done when this happens, so going to A&E in the middle of the night seemed pointless. 6 weeks ago I had another episode, this time during the day and went to my GP who could clearly see the distress I was in, but again - increase the steroids. She did however manage to bring forward the appointment with my Consultant from the end of December to next week (12th). 3 weeks ago I had a chest infection and went on antibiotics, cleared up and all seemed ok. Then on Tuesday this week, the cough (dry and always there as part of the disease) seemed worse, and the effort was wearing me out. By 2am my breathing was very tight and seemed worse than ever - so - this time I called 111. They then sent an ambulance, put me on a nebuliser and decided to take me to hospital.
What interests me is that whenever asked what my condition is, not many if any, have head of it. Therefore they don't seem to understand my symptoms when acute and how I'm feeling, even though some readings seem normal.
Proof of this was on Tuesday at the hospital. After having usual obs taken, and bloods that were left sitting on the tray, I was finally seen 2 hours later (it was a busy night). The Doctor examined me, asked the usual questions, went off to speak to his senior, then came back and said all seemed ok and I could go home, knowing I would be seeing my Consultant on Monday.
What I wasn't impressed with was that nothing happened to the bloods, I didn't have an X-Ray as is normal when admitted before - and that as the day went on, I started coughing up stuff which was obvious to me, that there was an infection. So, off I go to see my GP who confirmed that there was indeed a nasty chest infection going on. Had the Doctor at the hospital done his job properly, this would have been picked up. I will definatley be mentioning it when I see the consultant on Monday, but this experience at the hospital has made me feel that I am perhaps looked on as a time waster - all because they don't understand my condition. Perhaps if I had COPD or similar, it would be different.....
Sorry for rattling on, but I wondered if others have had similar experiences and are left feeling just as frustrated?