Hey everyone, sorry for the delay on update. There's no mobile signal in this room only wifi and my partner kept the phone on my request for calls and tects for a few days.
Well I thought the wait in hospital was frustrating enough, thinking possibly tonight someone will come into the room and tell me... which was eventually what happened! 11.30pm Sunday coordinator let blme know about a possible liver donor and expected transplant to to take place 8am Monday morning, this changed to the afternoon etc... after it being a hot day and nil by mouth I wondered if it was going to happen or not. During the early hours wait I was lucky a more local lady who'd been through transplant here kept me company until my mum and partner arrived and stayed a few hours more to talk a bit more to them about her experience.
Not sure exact time operation commenced but in the region of early evening Monday. I felt relieved as I had the surgeon I wanted too. The donor liver was predicted to be a bit too big (& minor sti issue) Luckily nothing needed to be cut off the size if the liver. It took around 10 hours and apparently I had 16 bags of blood in op due to a major bleeding issue.
Apparently a few hours in ICU I was subconsciously pulling on my breathing tube so took it out and a few hours later that morning I was woken up.
I did some physio, but most of the day was hazy. Today I've had central line and tummy drains removed although still a bit swollen although I no more have a yellow belly. Got a few kidney probs but no major issue yet. Doctors & surgeons are impressed especially during the lapse I had in op I think they thought I'd be on more machines longer and sedated a long while.
Never had a general anesthetic op before, so trying to get use to the pain... sometimes feel like a wuss though! Got to do what you've to do to survive after only get one life to fight to keep going.
Next step I hope to be moved to the transplant ward at the weekend seeing how I go day by day
My story is a bit odd as it's a bit of a one off condition! (HHT) I wasn't put on the waiting list with a ukeld score like most. 6 months ago I had no idea I had liver issues!
I'm happy to talk to anyone going through anything similar for non clinical advice just through my experience so far as the patient.
Sorry if riddled with spelling errors, blaming tiredness!
Alicja Burns xx xx xx