Thursday, 22 May 2014

Home (Again) and Grounded.

Well what can I say. I think I have just lived through the most stressful five days of my entire life. However it is over and I made it through without major physical or emotional trauma, well maybe a bit of the second one.

Another day, another hospital.
Having had not pump problems for over 24 hours I was finally sent home around four yesterday afternoon. After much head scratching and discussion between myself and the PH team we all came to the conclusion that the backwash of blood from my earlier split connector must have clotted in the line. This caused massive concerned because it meant I wasn't getting my drug. However by forcing the pump to work I must have either broken the clot away and flushed it out of the line or dissolved it. Whatever the cause, as the pump was now working correctly and I was obviously getting the drug, the decision was to let sleeping dogs lie and not interfere. So all the planned flushing and fiddling was shelved and a 'wait and see' approach was adopted instead. This was fine by me. It meant spending a night in hospital with the prospect of an early release over having to wait around with a canula in my arm until my line could be replaced.

Lasagna apparently.
Whilst there I enjoyed the delights of the hospital meal. Well it doesn't get any better I'm sorry to say. First up was breakfast when I was presented with a fortified orange juice. This was a much larger portion of juice than I was used to in hospitals so I was rather delighted. Then as I picked it up I noticed a label on the edge of the container. This juice was meant for another patient on another ward. I pointed this out and my lovely looking juice was removed and replaced with something resembling dirty water but masquerading as apple juice.

Around mid morning I was given a menu for lunch and I chose the lasagna figuring there was very little they could get wrong. How mistaken can one girl be? Lunch arrived and with much anticipation I raised the metal cover to find.....a chicken leg and a pile of chips in a small puddle of gravy. I decided not to bother making a fuss and eat what was put in front of me, it wasn't good but it wasn't totally inedible, unlike the ginger cake I was presented with later that afternoon. That could definitely have been used to clean cars or something.

A crime against cake
Late afternoon and my x rays, blood results and infection tests were back and all clear. The decision was made to send me home with Carl on speed dial on my phone in case of further problems. I'd spent an almost sleepless night in hospital listening out for the pump to start alarming so once home, despite being nervous, I crashed out pretty quickly and slept past nine this morning.

I've been told to take it really easy. I'd been without my correct dose of veletri for going on eighteen hours and I was beginning to feel the effects. My breathing was worse, my blood pressure was up and my SATs down, though these had begun to climb again during the day. It's going to take a few days to get back to normal physically and a lot longer I suspect to regain an mental and emotional equilibrium. So I'm going to follow advice and hibernate for a few days to mull things over and to, literally, get my breath back. I will have to go out tomorrow though as I'm back at Papworth to collect the results from recent tests and 'have a chat' about why the transplant didn't go ahead. I don't really want to talk about it but it may help to fully understand what happened.

Someone was so pleased to see me
he curled up next to me in bed.

So it is off to the settee with some fruit and a good film where I might have a quiet cry to myself because I think I might deserve it.