I'm back!

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Well, I was discharged yesterday (Weds 12th), a process that took all afternoon. I'm home and attempting to pick up the pieces of life again.

I'll draw a veil over the hospital experience since a lot of you have been there and done that. I'm just glad I wasn't as badly off as some of the other poor sods on my ward.

I mentioned before I had vasculitis; this is a general diagnosis much like "fever" or "rash" so I have some bigger words for those of you who care, like: Microscopic Polyarteritis and: Anti-neutrophil cytoplasm antibody (ANCA) associated vasculitis.

What these mean is that my body is producing antibodies which attack the linings of arteries and veins. Since this is all in the blood rather than other tissues the major effects are in organs which deal with the blood specifically, such as lungs and kidneys.

My lungs seem OK function-wise although they'll want to investigate the suspected partial collapse. The initial results from the kidney biopsy indicates some damage but it will be a few days before I find out how much damage. The fact they sent me home is promising, I think. If my kidneys had irreversible damage I would probably still be in there connected up to pipes.

I am on a serious course of steroids which is the standard treatment for this condition. Along with that are other drugs which suppress the side effects of the steroids and others which prevent infection, since the object of the exercise is to dampen my immune system. All the drugs tail off pretty rapidly but the whole course is 2 years. If I am unlucky I might end up on that final dose long-term.

I'm being seen by a world expert in vasculitis which is both good and bad news. Good in that I'll have literally the best care in the world and bad because he obviously considers me an interesting and non-typical case. I'll get seen every two weeks to begin with and then every month or so.

It has occurred to me that the symptoms I had previously experienced, which had been diagnosed as Fibromyalgia, may all have been due to this current problem, submarining along until something stressed it to come to the surface. I'm wondering if others who have the Fibromyalgia diagnosis have also been mis-diagnosed. There is a lot more information around now than there was then, perhaps it is worth others revisiting thier own circumstances in the light of my experiences.

It will take me a few days to settle down and get back into routine. Because of the heavy drugs I may experience side effects which could impact either the amount of writing I can do or, worse, the quality. You'll just have to bear with me until I rebalance myself.

At least I'm still here, and at least I can now rejoin my BCTS family.

Penny

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