Progress..

Well I've been on 60mg of prednisone now for 5 days. There's been a dramatic improvement in my breathing and sense of well-being (pred would do that anyway).
On day seven we are going to drop down to 40mg and stay there for some time.
I'm suggesting four weeks, no one is disagreeing with me.

I had a really good talk with the head of respiratory, Dr Jones. He's in charge of my case and the overall treatment plan. I said to him that I knew he was very set in his view of my situation and how to treat it but that I had no idea what that plan was.

He really opened up and talked to me in a very relaxed manner, not like the confrontational approach he had when we first met. He listened to what I would like to see happen and did not disagree. I told him I wanted to give erythromycin another chance, that I really needed to get off prednisone before it completely wrecked my body (more than it has already). But that I didn't want to make the mistake of weening too fast. I believed a 6 month taper would be best. I think we are on the same page.

Today I had an ultrasound guided needle inserted into my back in an attempt to get a sample of the fluid that was remaining in a small pocket in my chest. It was 38mm long and they had about ten goes at finding the tiny pocket. In the end they managed to get just a tiny (maybe 1ml) sample of fluid. So that was good, Had they drawn out a quantity of pus I would have been in for surgery and having my chest opened up, drained and washed out. I wouldn't recover from that in a hurry.

I'm now walking down the corridors a couple of times a day. My leg muscles are so atrophied that they hurt from just a few hundred metres of walking. It will be a long road to recovery when it comes to physical fitness. I'm a real physical mess, no muscle mass at all.

I'm getting wiser to the food people, they still screw up at least half my food orders, but I try and add things I know they can do so at least that way I don't go hungry. Today I ordered a chicken salad and instead of contacting me to say "not available, choose something else" they just left it off! Good thing I also added the ingredients to make a bacon and egg sandwich which filled me up nicely by itself. I didn't trust them to make me one, best to just order the ingredients.

I'm coughing a lot, not involuntarily, but because I have a lot of phlegm on my chest.
It sits in my airways and rattles so I have to cough to get it clear. It's annoying but also surprising just how much I cough up. Must drive the guy in the bed next to me crazy. But he doesn't say anything.

Till next time...