Over the next two years, I waited. I carried my ‘transplant only’ phone with me EVERYWHERE. Even to the toilet, no joke. The Transplant team even had our home number so at the start, even when we got a call on the landline we all jumped, seems silly now. If it was late at night and we got a phone-call we would freak out. We would all wake up in an instant and think ‘who else could be calling at this late hour?!’ Panic would immediately set in as we all shuffled to get to the phone as fast as possible and then throw it around trying to get someone else to answer it. Weeks and months passed with no phone-call. However I met with the transplant team at regular intervals to check I was still fit enough to survive transplant. Around the same time one of my friends was also on the transplant list, which was a huge comfort. It meant I had someone to talk to about it, someone else who understood just how nerve-wrecking the whole thing could be. Every time I was at the clinic I would see her and we would catch up on each other’s progress.
Then one fine day during Summer, I was driving to collect my daughter from school. The sun was shining, the air was hot and the sky was cloudless. It was one of my better days. I was well today. I was alive and I was wearing a short Summer dress. I wished everyday could be that kind to me. Then, the transplant phone rang. I nearly had a heart-attack. I suddenly pulled over on the side of the road, like a total maniac and grabbed the phone from my handbag. Private number. I thought, ‘Oh God. THIS IS IT.’ I could feel my heart beat in my throat and my hands were trembling like never before. I answered the phone only to hear the man on the other end had a British accent, THIS IS DEFINITELY IT. Then he proceeded to ask ‘Is Kevin there?’ Wrong number. In my manic state I was so angry. I was shaking, I was crying, my heart was pounding. I started lecturing the poor man about how important this phone was and never to make the mistake of calling a wrong number again! I was manic. The guy was so apologetic. I hung up in a fury and took a deep breath. Is this how I was going to react if this was the real deal? Verbally abuse someone down the phone and almost vomit with nerves? Oh God.
After this I continued to wait, everyday. I waited. I checked the battery life and signal strength of the transplant phone at least once every two hours. It was exhausting. Like waiting for a bus in the rain that you can never see coming. Some time later I met with my consultant told me my friend got her transplant and was doing well. I was delighted. I was happy for her but I was a little sad for myself too. Is that bad? I couldn’t help it. What about me?
A few days later I decided to call the Transplant wing in Newcastle to see how my lucky friend was doing! Was she walking yet? Was she breathing in fresh air like a normal person? Was she feeling more alive than ever? The transplant co-ordinator promptly told me to contact the hospital and ask them. That was strange. Why? Things like this had never been an issue before, why now?
I rang the hospital as instructed and they announced to me that she had passed away. My heart almost stopped. They went on to stay her cause of death was the same as that of my brother. Her Cepacia had colonised and infected her new lungs. She was gone. That was it. Just like that. I didn’t really know how to feel. I was annoyed with myself because I was wishing it was me when I heard she got the call, how selfish it that? The poor girl lost her life and I was jealous of the life she could have lived.
I stayed on the transplant list for another few months until one afternoon in August 2007 when I got a call. I was told they were no longer going to transplant anyone who is colonised with Cepacia. That included me. That was it. It was all over for me before it even began. My dream of a new life, a new me had crumbled before I even got the chance to build it. I felt sorry for myself, I felt distraught, confused and concerned for my family, especially my daughter. Now what? I wait to die? How do I tell my young child that? What do I say? How long? How long do I have before my own lungs kill me? Now I have no options. I now know I am dying and there is nothing I can do. I can’t accept this, how can I? I am young, I have a child, a life, a family. Mere minutes before the phone-call I had options, choices, chances and now that was all ripped away from me. My fate now was decided and certain. I will die. Maybe not today but some day and time is not on my side. I will never have that inspiring, fairy-tale ending.
-Alison & Christina.
It took me quite a while to stop watching the phone. Maybe it was just habit or maybe it was hope.
**You can follow me on Twitter @Christina1Kenny to follow our story.** -Christina.