The acute rejection episode took four days to control but is now apparently over. J had been booked in for a second liver biopsy on Friday because LFT numbers were still heading upwards, and she was still looking and feeling poorly when I left Thursday night.
Friday morning I arrived to find a new person singing in the shower. Overnight she had lost about a meter of fluid-increased girth, mostly from a bum so spectacular that three Italian workmen have already fallen to their deaths from the crane tower opposite her room, and was her usual bright and optimistic self again.
Blood had been taken at 5.30 am and at 8 am the registrar told us there was an 80% chance that the biopsy would have to go ahead, but J did not believe him and sure enough at 8.30 the tests came back and the graphs had turned downward for the first time since the transplant. The biopsy was cancelled and they said 'start thinking about going home next week' !
Of course they then gave her another big hit of prednisolone which knocked her about for the rest of the day, but this will be tapered off over the next four days. Yesterday her surgeon poked his head in to say hello and to admire his handiwork, and said she could go outside the hospital over the weekend, and maybe stay at home overnight Monday or Tuesday.
I am just a teeny bit suspicious, as is my wont, that this is not in Joc's best interests. J still appreciates help in the bathroom and with getting in and out of bed, and is of course very prone to infection. I think we might just take it easy for a couple of days before trying to get her into the car, which is rather high off the ground, especially since the weather is turning cold and wet.
Nevertheless this is all very encouraging, and we continue to be surprised at the warmth and goodwill shown towards our Joc. When he heard the news Joc's first gastroenterologist jumped into his car and found his way across town to the Hospital, to pop in and say hello. This is a guy who if you need to see him urgently on a life-threatening matter, is available three months from next Thursday. He is a sweetie.
Perhaps less surprising to those who don't know his antipathy towards things medical, Joc's brother also dropped in, but after a nurse came in and without interrupting Joc's conversation calmly drained half a litre of black fluid from a bag hanging out of her stomach, he became rather pale and soon recalled an appointment elsewhere :) (The bag will be removed over the weekend, and the T-tube in about 3 months.)
So, at present the plan is to maybe take J over to nearby relatives for lunch on Sunday, I will clean the fridge and shop on Monday, a team of house cleaners is booked to blitz this apartment on Tuesday, and J should be home for an overnight stay in HER OWN BED on Tuesday....Yay!
Todays pic shows Joc's dope sheets, on which she will be examined and tested
before she is allowed to leave the unit. This shows only the varieties, not
the quantities. Some of these will be phased out over the coming weeks, but
J will surely add a whole bunch of vitamins and whatnot, so we will need to
tow a small trailer of pills wherever we go for the rest of our lives.
J will also wear an SOS bracelet which contains a medication list written in tiny handwriting on waterproof paper, to prevent well-meaning ambulance staff accidentally killing her with inappropriate drugs, should she be run down by the proverbial bus. These are small prices to pay for being *alive* and we look forward positively to planning and enjoying a whole new lifestyle in the country as soon as hospital visits are down to about once per fortnight.
I am sure Joc will be in touch with everyone in the not too distant future, and I thank those who have written me letters of appreciation for my perhaps somewhat lop-sided view of the transplant process, which I hope did not actually put anyone *off* having a transplant :) All Transplant Units have an army of Counsellors, Co-Oridinators, Social Workers, Educationists, Religious Representatives and such like to feed you soothing cliches and statistics, if that's what you want.
The Education sessions are tedious and none too popular and several attendees have suggested that the money could be put to better use. Until a few years ago the unit was apparently so short of funds that the specialised equipment needed for the operation was loaded on to a truck and transferred between the donor and recipient hospitals because they couldn't afford to duplicate it! Fortunately an incredulous anonymous donor mailed them a check for $250,000 after hearing about it.
Best to keep such opinions to yourself though - it is these people who will evaluate you 'psychologically' for the transplant list :)
Hopefully, over and out from JH.