22 October 2002

The transplant doctors decided to go back to square one and try heavy steroids again. Only the first couple of hits were intravenous, so yesterday (Monday) they said there was no need for Joc to take up a costly transplant room any more. These were only for sick people, and she could be managed as an outpatient. We hope they need the space - in any case we sure weren't going to argue!

'Management' will consist of adjusting oral drugs and of course regular blood testing. Joc must take her temperature twice a day, call them if it goes over 37.5, follow the specified drug chart and attend the Centre twice a week. Sure beats having needles in your arm night and day. If this regime doesn't arrest the rejection we will need to "sit down and have a long talk" with them but hey, something is going right because she hasn't had a fever cycle for two days now. An increasingly-large list of 'intercessors' will be greatly interested in this fact...

Joc has also been doing some Visualising - the opposite of the sort of stuff cancer patients are supposed to do. They visualise an army of T-cells relentlessly attacking unwanted tissue, while J visualises her T-creatures with sombreros, loafing in hammocks, too soporific and lazy to start in on this towering lump of liver :)

Also increased is Joc's oral dose of FK506, a powerful antirejection drug. Next time you read in the newspaper about some asshole concreting over a rainforest, a greenie will be quoted as saying we cannot afford to lose biodiversity &c. &c. You don't *really* believe this, but FK506/Tacrolimus came from a fungus found on Tsukuba mountain in Japan. A sister compound, Sirolimus, came from a fungus found only on Easter Island. Such drugs have revolutionised organ transplantation. If for no other reason one must continue, metaphorically or actually, to lie in front of the bulldozers of greed and evil.

Despite the battery of drugs, most of which list 'sleep disturbance' on their list of side-effects, Joc hugely enjoyed the first night on her own latex mattress for 5 weeks. I myself slept like a log, in fact she got up first and made the tea. :) Alas that I can no longer plausibly claim not to understand the operation of the clothes-washing machine...

Showering is a bit slow, there are dressings to be changed, and they have stolen the bile drainage bag so I can no longer fret over its colour and volume. The cap end had fatigued off the Tee-tube, so they fussed and worried at the Unit with fancy medical fittings, none of which did the job properly, until some sensible person simply tied a knot in it. If Joc needs another cholangiogram they will simply cut it off, and after three months the tube will come out completely.

The first container load of chicken soup has arrived, and the homely sound of nagging and muttering fills the previously empty and hollow apartment. Apparently although I did a zillion loads of hospital washing I forgot to 'change the towels' for 5 weeks. Other crimes will be discovered; there is no telling what affronts to Joc's clothing drawers and cupboards have been perpetrated. I focus on Joc's cute, squeaky, breathless, bossy voice - a funny effect of prednisolone. It reminds me of the early days after the transplant when Leah and I used to tease her and steal her chocolates.

When Joc stops fussing and tidying, no doubt she will tackle her daunting email Inbox. I will leave her to her own devices, and if there are any more updates I will put them on the website instead of mailing the whole list - in any case I won't be able to get near Joc's computer :)

Over and hopefully, out - again.

Love, JH.

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