More Numbers, More Patience!

Another blood test, another visit to my GP, another set of numbers to crunch and digest. And more patience expected of me – never the world’s most patient person.

The bad news is that my platelets seem to be trending down as the steroid dose is reduced. The last four readings have been 153, 177, 149, and this week’s one, 127. While they’re still in the safe zone, above 100 (thousand), they are at the low end of safe, with the pathologist marking the last two readings as ‘mild thrombocytopenia.’

Alien Attack!

Of course, this then begs the question – why is my immune system intent on destroying my thrombocytes, and is there anything – other than destroying the immune system with corticosteroids – we can do to stop it?

It seems fairly likely that a virus infection, possibly the mild dose of ‘swine flu’ I had in October, triggered the immune system to view my thrombocytes as alien invaders to be destroyed quickly and efficiently. If they really were aliens – say, daleks or cybermen – I’d be very proud of my immune system, fighting them off with no sign of The Doctor anywhere close by.

But, wait – these aren’t aliens – these are necessary members of my corporeal community with important roles of their own! Apart from causing my blood to clot at any injury, my platelets also help wounds to heal. I just found out that their name, ‘thrombocytes’, literally means ‘clotting cells’ (Greek: thrombus – clot, cytos – cell).

What we need to do now is to find some way of getting my immune system to recognise that my platelets are on the same side of the war against the real, biological aliens – that they’re friends, not foes.

And in the meantime, keep the numbers up as the steroid dose goes down.

Unhappy Kidneys

I’m still peeing large amounts, but no longer vast cataracts of liquid, thank goodness. So my kidneys are gradually improving, but that funny, almost metallic, taste in my mouth that makes me want to suck peppermints all the time, is apparently a sign of the kidneys being damaged. Probably by the prednisone, but possibly by other lifestyle matters as well, such as my chronic irritable bowel.

The worst part of this, apart from a natural concern about the state of my kidneys, is that the taste in my mouth is affecting my enjoyment of coffee. Suddenly coffee doesn’t taste so good any more!

If my kidneys are still not happy next time I see the doctor, she will prescribe some herbs (Chinese or European, I’m not sure which) to cheer them up. These will probably taste foul, but I won’t know, until my kidneys are functioning properly and I no longer have that strange taste in my mouth.

Still on the Wagon

Apart from celebratory drinks with friends over Christmas, I haven’t touched any alcohol for three months. Not even on my recent birthday! I’m not a heavy drinker now I’m not in my 20s, but I do enjoy a glass or two or red wine with a meal, and/or the occasional whisky. In the summer, I like a Cinzano Rosso or Sec over ice.

Now, remaining teetotal, while not a huge struggle, is an ongoing disappointment. A gentle pleasure denied me by this stupid disease. So I’d hoped that the steroid dose was low enough at 1.5mg that I could be allowed a glass of red wine with my evening meal. I was even prepared to barter my daily mug of coffee for an evening tipple.

Nope! No way! In fact, the barter had to go the other way. My doctor was prepared to allow me my daily coffee (though she’d rather I didn’t) in return for a promise to stay off the demon drink. I was tempted to quote St Paul’s advice to her: “take a little wine for thy stomach’s sake” , but I don’t think she’d have been amused. (Besides, modern translations probably say 'non-alcoholic wine', and what’s the point of that?)

It seems my poor body is not strong enough yet for strong liquor – not even an environmentally friendly and very smooth blend of South Australian shiraz and merlot.

Weaning Ever So Slowly

What with the kidneys, and the headaches I've had off and on, and the lethargy/feeling like a lump of lead, or the days when I can't stay awake, it seems I'm still cutting down the steroids a touch too fast. So instead of going from 1.5mg to 1mg this week, I have to take a smaller jump - more of a hop, really - to 1.25mg. I'll need a pill cutter for this, as the 1mg tablets are hard enough to break in half, let alone quarters.

This extra step adds at least another week to the 'getting off the bloody steroids' timetable. Maybe by the middle of March?

Now to the good news

Yes, there is good news, despite all my whingeing. While my weight remains the same, there are more days when I can get into my baggy green pants, and even occasionally squeeze into the stretch jeans (hiding my muffin top under a loose shirt or smock). Various swollen bits are going down – my bras almost fit, my face is a bit less pumpkin-like, and yesterday’s great achievement: I could get my feet into a real pair of shoes again!

The hot, steamy, tropical weather has ended too, with the start of early autumn. The humidity has gone, there is less bite in the sun, but it’s still gorgeous weather. Though this has no connection with weaning off the steroids, or being good about staying off the booze, it has certainly improved my psychological and physical ability to deal with both of those!