It was a normal afternoon, everything was as it should be - mum had arrived armed with magazines and stolen some of my chocolate and in her attempt to eat it hastily so as not to be detected choked on it and spent the next 10 minutes telling me how sore it was much to both of our amusement – and Adam had just arrived, it was about 5.30, so the three of us were sitting idly chit chatting. The phone by my bed rang, it does so sporadically and is rarely actually for me, as people can contact me on my mobile so I don’t tend to give out the number. Normally I would let it ring due to the above reasons, but as my mum was there she picked it up and passed it to me. The nurse told me there was a call and then put it through. “Hi Emily, it’s one of the coordinators at Harefield. Guess why I’m ringing”. I said “no are you serious” and she replied that yes, there were potentially some lungs for me. I just broke down in tears. Mum and Adam were looking at me in fear and I managed to tell them it’s Harefield and through my tears say to the coordinator “I’m so happy” over and over again as I suddenly panicked that she may interpret my tears as those of fear or other negative response.
I passed the phone to my mum as I couldn’t speak and proceeded to weep “I’m so happy” in a slightly melodramatic recipient at the Oscars manner over and over at Adam and the subsequent steady stream of nurses and doctors who appeared excitedly at the window. A blue light ambulance was called and we packed a bag and off we went. I was by this point quite calm – a lot of the staff were in tears.
My mum says I grinned all the way there in the ambulance, and whilst the coordinators words that we had no idea of the quality of the lungs yet so this was all very provisional were firmly in my head, I dared to let myself think of some of the things which I never do, things about the future, which if I concentrated on them regularly I would probably become all despondent as it is much healthier to concentrate on the now. We arrived smoothly, and the rest of the family congregated with remarkable speed. Bloods, washing and prepping and obs were done and the gown was donned. I signed the consent form which lists the possible risks (it always amuses me they list “chipping of teeth” due to ventilator next to “death” as if they are vaguely in the same category) and then it was a question of sitting and waiting. My lovely coordinator was wearing very distinctive high heels so we could hear her approaching every time she came in the room, and we would all fall silent as the footsteps got louder. At 10pm she came in and walked over to the bed, and I knew straight away it wasn’t good. What I hadn’t prepared myself for is that it wasn’t the organs, it was me. My temperature was up and my blood results were fairly high, the combination of both indicated infection and the decision was it would be too risky to undergo the operation.
Disappointment is not the word, and in possibly the least brave fashion ever I wept like a baby. I begged her to take my temperature again and it had come down slightly. She reported such to the surgeons but as time went on it became clear that they still felt this was too risky. I cannot fault any of the team, they had everyone and anyone on the phone studying all my results, they were all desperate for this to happen for me. At about 11.30 we got the news that there was a problem with one of the lungs and so the person who had been brought in as back up for single lung would be the recipient. This news actually lifted my spirits, as it was obviously never going to be my time. By this time I had composed myself enough to remember my manners and thanked the team for doing everything they could and for calling me in. The problem with the lungs meant the backup for double also went home disappointed, and as weird fate would have it it is someone I know, and I have spoken to her since and both of us are heading forwards with our heads held high, stay strong and smiley chickie.
They were intending on me staying there and returning to the Brompton today but I couldn’t bear the thought of waking up at Harefield with my tired old lungs still so bless them they got an ambulance which picked us up at 4am and we finally got to bed around 6.
Today I am feeling much brighter. Despite none of us having any sleep I dragged my poor mum and A out this morning to go shopping, as clearly what was needed was to by something frivolous, pink and expensive (which is what I did, it’s a gorgeous chunky charm necklace and I love it). This was the dress rehearsal I have been desperate for, it shows me that this isn’t just theoretical, this is real, and actually could happen for me. “Dry runs” as they are known in America happen to a great many people; one in three calls for lungs are false alarms, and so we knew this was highly likely. I got to see what happens, and more importantly test my own feelings, and I am so more than ready for this. After over 17 months of nothing, this is a wonderful beacon which makes it all the more real for me. More importantly than that, yesterday a family lost a loved one, and at a time of great tragedy decided to donate their organs. Compared to anything I am feeling these are the people who should be in our thoughts right now, and they have given me renewed hope that my chance will come.
Update to say there is no update!
1 week ago