Clinical Trials and another week down.

Sorry it's been a week, my tactic of letting the days go by without noticing is maybe working!

I seem to have been on the phone with Kings College Hospital all week about various things. Firstly, on Thursday I had an appointment to discuss my participation in a clinical trial of a new drug for immunosuppression post-transplant. There was a lot of faffing about to change the time, but eventually I got there at 2pm on Thursday and had a really interesting chat with a surgeon and a nurse. Basically the drug, Everolimus, is there to supplement/partially replace the usual immunosuppresant: Tacrolimus. The thought behind it is that initial studies have shown Everolimus to do as good a job at immunosuppression, but be much gentler on the kidneys than Tacrolimus (which can cause some kidney damage). It sounds like a win-win to me, so I've signed up for it.

Secondly I've changed my consent form for the surgery. I used to give consent to receive either a full liver or a half a liver (split-liver) from a donor, but having discussed it with my hepatologist, and having done some research I've decided that while I am keen to get the op. done, I'd rather wait for a whole liver to become available as the outcomes are better.

I'm seeing my hepatologist for my routine appointment on Monday, but I don't expect any particularly interesting news. I'm still top of my list, but as I am probably one of the healthiest people on the list (as I have no abdominal water-rentetion - ascietes, no kidney disfunction, nor signficiant brain impairment - encephalopathy) then I reckon I've probably been leap-frogged a few times by some very ill people. Apparently the hospital has been very busy with transplants recently, so unless I've been very unlucky and none of them have been medium-sized A-type livers, then I'll assume that's the reason. Still I did get a tongue-in-cheek promise from the very friendly surgeon and nurse I talked to that when they were both on-call this weekend they would keep an eye out for something for me!

Sleep-wise I'm all over the place! Last night I didn't get to sleep til 7am, then slept til 12. I slept again from 2pm to 6pm, then from 9pm to midnight. Not surprisingly I'm now as wide awake as can be. I've finally finished the entire series 1-7 of The West Wing (it was absolutely brilliant), and I've ordered something called The Wire, series 1-5 from Amazon which is apprently also brilliant so I'll get stuck in to that at some point too.

So here we are, 15 weeks on the list, and 2 weeks since the last call (the false alarm). I arbitrarily plucked the figure of 3 weeks out of thin air as the time I expected to wait for the next call so who knows - I was right with my completely arbitrary mid-January estimate for a call last time!

Positive thoughts toward the Kings liver unit please to get them to hurry up.... and thanks for reading!