Three weeks ago I thought I might be heading for the exit; today I cheerfully swept up the leaves and bagged them - at 4C! How come? Changed and much better medication. And since this may help others, here goes...
I have had infection events continuously for several months. Becoming both concerned and annoyed I had a go at the GP. He arranged X-rays and more critically a CT scan - first since diagnosis six years ago. And then referred me back to the hospital specialist.
And he took me through what he saw on the x-rays and the CT scan - and announced I was on the wrong medication and needed to go on long term anti-biotics. I was a bit depressed by the latter but read on.
What he saw was NOT so much that my damaged alveoli (the little oxygen transfer sacs - hundreds of millions of them) but the broncheoli which led to them These were becoming filled with mucus which, due to damage (smoking until 20 years ago) were unable to clear. They have little cillia in them which should move the mucus back and out. And that mucus was infected and very hard to cure.
So off the Seretide inhaler and on to Fluconozole, better for broncheoli apparently. And on to long term Clarithromycin (500 mcg pd) to attack and restrain infection. Result? A huge improvement. Far less breathlessness, fewer breathing episodes, much improved energy levels (oxygen at last!).
Lesson for others? I guess the main one is do NOT despair but DO push your medical help to make sure you have the best investigation (scans?) and think outside the box. Remember - your GP is NOT a specialist - the clue is in the name! Be fair to them and urge them to refer you if things are getting worse or not working.
Mind you, I could not have done any of this without the help of the Pulmonary Rehabilitation team at Sheringham, Norfolk - so a big thank you to Mandy and her colleagues. Their work showed me how I could help myself more and better.
PS - The image shows how they SHOULD look!