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

Comments

Glad to see you return to us,

Glad to see you return to us, I'm just sad you have to go through all this. Still the important thing is that you're getting treatment. I don't envy your medication list, I myself sometimes feel more like I'm picking up a whole pharmacy when I fetch my prescription.

Still you have to do what's best to aid you in your recovery and continued health. As for writing, just remember to rest often.

Big hugs

Lizzie :)

Yule

Bailey's Angel
The Godmother :p

So glad

Welcome home.

Missed you a lot.

Here's to your health

J

Welcome back

Hi Penny

I'm so pleased to see you back, hope your health improves quickly and you can return to your excellent writing.

Hugs

Alys

So good to be home

After a stay in the hospital it is good to be home. May you continue to improve.

You mentioned a specialist who thought your case unique. We have known you were unique for years. We have always liked your uniqueness. It's special.

You take the time you need to get better. We will be here when you need us but really it's we who need you. So take care.

Much Love,

Valerie R