28 Days later..

Today is day 28. I've been here the best part of a month, and yet most of it seems a blur.
Yesterday I was visited by family members who had come up from Christchurch for my Mum's 80th birthday dinner on Saturday night. (The doctors had given me the night off to attend but I was very sick on Saturday, so was unable to go)

It was while talking to my family that Sarah and I laid out the progress I've made in the weeks that have passed and also I came to realisation just how sick I was.
To me I just think "I'm sick, but I'm OK" I just deal with what I have and make the best of it.

It was Sarah that reminded me that in the first few days I had to be spoon fed, was on oxygen and had a tube in my chest. That it took three weeks before I could walk again, and only a couple of days ago that I could shower myself. I think your brain just glosses over all that. If I can open the laptop and type a few words, turn on the TV.. I must be OK.

Yesterday was the first time I had enough courage to do some research on my illness.
I was in for a shock. The bug I picked up, Nocardia, is often fatal and usually causes brain damage, heart valve damage and can be extremely hard to remove. No wonder the doctors were in such a spin.
Curiously once in the lungs it demonstrates exactly the same symptoms as BOOP.
It's entirely possible that I've had the bug since late last year and it's been mimicking BOOP and I've been throwing steroids at it. Lowering my immune systems defences even more.

Fact is no one knows, the Doctors can't say and I can only guess. It was two weeks after starting antibiotics that my lungs were tested for the bug, by then it was gone. The question is was it there in the first place, or just in my chest cavity and blood? I think It was in my lungs personally, but that's just a hunch and if I'm guilty of anything it's that I have been second guessing my illness and it's treatment in the dark for quite some time now. (as have the doctors)

If my pneumonia was from nocardia then my experiment with erythromycin may well have been working and I may have been well on my way to weening off prednisone.
My hope is that they will let me try again once my lungs have recovered from this current illness. Apparently they are a mess with even more scarring and fibrosis which never recovers. Those parts of the lung will no longer function. I can live with that. As long as I can walk in the hills and do moderate exercise I'll be fine.

I may well be home in a couple of days, I'm fairly stable now. However I'd like to have seen an increase in my blood counts and a lower heart rate first. I guess if they aren't going to improve, it doesn't make much difference where I am. Home or hospital bed.
The cotrimoxazole antibiotic that I will need to take for six months to battle the nocardia bug also has a negative effect on my blood counts.

The plan for when I return home is to make the house safe for me from falls. My legs are incredibly weak and an effect of the prednisone is that sometimes they just turn off and I fall like a brick to the ground. We will put a hand rail in the shower and any other mods I might need once I've been back for that first day we should have a better idea.
I certainly won't be going upstairs for a while!

We plan to set up my stationary cycle trainer in the lounge and I will sit on that slowly pedalling while watching a movie, TV etc. Daily walks on the treadmill too. My legs are like bits of string. All the doctors comment on them when they first see them. Just skin and bone, the muscle has been stripped by the steroids and 10kg weight loss since arriving here.

Well, I'm off for a short walk around the corridors..