ON THE LIST
7th September 2009
Will be a day I will remember for the rest of my life how ever long that turns out to be. This was the day when I got listed on the active transplant list at Harefields Hospital for a double lung transplant.
17th August 2009 was the first call from Harefields sitting in the Churchill Hospital outpatients awaiting a two week admission for IV antibiotics. Just my luck!! The transplant co-ordinator had phoned to tell me that they were going to list me for transplant he asked for me to ring after admission was over.
The admission was over and it was all systems go.
24th September 2009 04.30
Liz had gone to work and I watched a video before settling to sleep about 2am I was woken at 4.30am by a phone call I woke up and answered wondering who it could be at that time, maybe Liz ringing about something?A voice on the other end said I am a transplant coordinator at Harefields Hospital we would like you to come in as we think we have got a donor organ for you, can you come in now?
I was totally shocked and confused and still half asleep I told her I would have to contact Liz and get her home from her night shift 30mins away and could I call her back I rang Liz told her and she started home I had nothing packed and was on oxygen so I stumbled around putting stuff in a bag and woke up the kids who were shocked my son got dressed and dealt with it well my daughter on the other had was panicked and crying and said she wanted to stay at home and go to school and didn't what to go with us I had to put my foot down and take control of the situation and tell her she had to come and asked her to pull it together I feel it was shock and a defensive reaction to what I was telling her I rang the co-ordinator back and told her that I would let her know when we left, she said the time was tight and to get there as quickly as we could.
I was totally all over the place but trying to keep it together for the kids and Liz but not doing a great job. I managed to put the medications in a bag and asked the co-ordinator if I should take a nebulizer as she had said stay nil by mouth she said yes and as I started it.
I can’t tell you all the silly things went through my head (how will I get pictures to renew my parking badge if I am in intensive care) mixed up with serious thoughts(how will Liz get into my bank account for money, the computer log-on and email account passwords) I took a piece of paper and jotted down several passwords and details of people that she should contact and tell even if things didn't go well. Liz got back and by this time the kids had got ready. We grabbed a few bits and put my medication in a bag so that the doctor would know what I was taking and Liz got the car round to the front of the house we all got on the road.
The journey was surreal and made worse by the fact that it was foggy and cold and we tried to listen to the radio but the noise was no relief from the thoughts I was having. Nothing can prepare you for the feelings that visit you at this time ,great hope and total fear mixed into a knot in your insides and shaking disbelief that it is finally happening. When we got to Harefield it was starting to get light. We got to the ward and went to the room that had been prepared with blood, tubes, swabs, admission forms and razors for shaving prior to the operation. It all started to feel very real.
The Doctor attended and started the process of admission with the withdrawal of a multitude of tubes of blood to cross match against the donor that was out in the world somewhere dying ,their life leaving them so that I could have another chance. I felt great respect for the relatives who had allowed this to happen and said a prayer to thank god for giving me this opportunity at a new life and new hope .
Quite Quickly it became apparent that on this occasion it was not to be. The transplant co-ordinator came back to tell me that the organ was not suitable as there were signs of infection present and therefore they would not be proceeding.
I was filled with a mixture of sadness and relief as the knot in my stomach began to untie and the adrenaline that had been sustaining me drained out of my system. The kids also breathed a sigh of relief, the whole process had been a bolt out of the blue to them. Although we had talked a great deal about what it meant to be on the active transplant list they had no concept of the events of that morning until they happened.
We go ourselves together and One of the transplant co-ordinators that I had meet on my four day assessment turned up to talk though the events of that morning. He asked how we were and also asked if we needed a rest from the listing as the whole process was very stressful. We said no and that we were happy to continue, he mentioned that due to my long lungs I was a good candidate for any large lungs that came up and therefore I may get called often. I took little notice of what he had said about being called often, choosing to hear that I would get new lungs earlier without understanding how that may pan out and when we had got everything together we made our way back to our car for a less frantic journey back home to rest.
We tried to rest and my daughter went to school in the afternoon as she was going to the fair with her friend ,my son was less able to get over things and spent the day at home and continued on edge for the rest of the day. I was totally worn and ill as any energy I had disappeared when I got back home and realised it was over for the present but a multitude of things that were outstanding to get sorted would not leave my mind and I felt a manic sense that I must get them sorted as soon as possible.
Later in the day my son had recovered and decided to go down to the local youth club he left and went down with some of his friends and I was recovered enough to consider getting on with life by attending my photography club night as they were having a practical evening of portrait taking using lights and I thought I should go as I had intended to before the call I was nearly ready to go when we received a call. My son had found things too much at the youth club when one of his mates had asked him why he had not been at school. He had decided that he didn't want to tell anyone about what had happened but his frayed emotions got the better of him and the youth worker had called for us to come and get him as he had decided to go home. He was inconsolable and all the emotions of the day came flooding out, I held him tight and told him I loved him, that I was proud of him for coping so well. I told him it was right that he letting out his emotions and that anyone would feel the same way. On another level I had to think that it was me that had caused this and I was powerless to lessen his pain except by a hug and kind words that seemed so inadequate. As a transplant candidate you spend so much time concentrating on the positive elements to the procedure for you that the effect on others is clouded until I saw it in my sons face and the worn look on my partners face on the return journey from Harefields. This was just the beginning and the week was not yet over. I went to the photography club and the evening went well I had a chance to talk to another member who had received a kidney transplant himself and knew the process I had gone though that morning but on another level I felt totally alone.
Trapped with my family on a unknown road to hope, maybe disappointment and punctuated with stress and uncertainty for all of us. I hoped that it would work out soon, but that is in the hands of God and the transplant surgeons. I offer prayers for anyone else finding themselves in this position
I do know how you are feeling!!