Bury St Edmunds
We were waiting for the phone call to tell us I had been put on the 'live' list, we had been told two or three days at most. Well as usual since I had become ill, I was waiting and waiting. Thursday, Friday, weekend and Monday came and went and I was waiting, waiting, waiting.... While I was in this state of 'waiting', we were looking forward to our holiday in Suffolk and Norfolk, another thing to look forward to and help us just get away from it all and get our heads around what was happening. In the end, I made a phone call as we were about to go away and I still hadn't heard, obviously this information is of major importance to me and it will be a huge step to find I am actually on the live list and officially waiting for a heart and lung transplant.
I was told definitely within the week, so off we went on holiday with our cases packed. I also took a case packed with things for hospital, I expected the call while we were away now and once you are on the list, that all important call that there is a donor can happen at any time. I had been advised to pack a bag ready. To be honest, this wasn't difficult because I had been in hospital so much during the last year, I had got in the habit of unpacking my hospital bag when I got home and re packing it again straight away ready for next time. I had learned by now that there is always a next time with this aggressive PH.
|Beechwood Hotel, North Walsham, Norfolk|
|Beach huts at Southwold|
So I am pretending to be normal, but really I know I'm a long way from 'normal'. This is brought home to me even more the next day.
|Beach at Holkham|
We headed back home, still no phone call, our mind had been taken off it for this week, but I would have to phone yet again on Monday. I made the phone call and was told I am already on the list and have been for about a week! I put the phone down in shock, speechless. Oh well, its happened, its official. Rob is quite angry, I wasn't advised as promised and he telephoned back to say so. Its such an important moment for us and such a let down we were not told. Many apologies were made and a misunderstanding had happened. Oh well, all these hospital ups and downs are becoming part of my new job!