I was discharged from Hospital again last Friday afternoon with no night temps and things seemed to be going ok. My abdominal pain had subsided and most of the diarrhoea had moved on which was very welcome news.
We spent the weekend reading papers and catching up on a few phone calls to family etc. Claire made another trip east to catch up with us.
We headed to Lygon Street after a quick trip in to 7B to have my PICC dressing replaced on Saturday afternoon. I needed some new trousers as I’m down to 75kg and having trouble keeping my pants up! We also caught a movie Sweet Country – which ended up being quite bleak , the walk back from Lygon Street was about 14,000 steps so a good bit of exercise.
On Sunday we cycled over to the punt under the Westgate Bridge and back home via Yarraville – about 15 kms round trip.
On Monday walked up to Peter Mac for an out patients visit with some unexpected consequences.
After seeing the medical team they thought everything was going OK but upon a further review of my blood test results decided my liver had “gone off” and was showing signs of some Graft Vs Host disease (GVH). Treatment involves higher daily doses of steroids (150mg per day now) and and additional liver treatment. Graft vs Host is something they want to see at low levels.
So I spent the afternoon in hospital getting a top of two bags of potassium plus a litre of saline to help bring my creatinine level down again – it seems to bounce up and down like a yo yo.
For the time being I’m out of hospital, no temps and feeling quite good with the exception of the steroids which cause severe lack of sleep and don’t make you feel so good. But if it helps control the GVH then I’m up for it.
Lachy popped in the dinner on Monday night before Claire headed back to Perth.

The roller coaster continues in earnest. Keep up the fight.
You have a better prognosis than Barney!
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