The Dress Rehearsal – Part 1

It was Wednesday 19th March and I was watching TV, while mum was doing some ironing. She had stayed late that day because Andrew was away down south with work and wasn't due home until 9pm. It was around 8pm when the phone rang and I heard the voice of my transplant coordinator. He was asking if I was well and when I confirmed that yes, I was well, he told me that some lungs were potentially available and to start getting ready to leave. I felt a strange mixture of excitement and apprehension but managed to stay remarkably calm. I then of course realised that Andrew was unlikely to make it home before we had to leave and frantically started trying to reach him on his mobile, but his plane hadn't landed yet so I couldn't get through. In the meantime, we quickly got my case out (which was already packed) and added some last minute items, before packing a bag for Andrew and organising some things for Seb, who would be going to my inlaws for the duration. The coordinator phoned to tell me the ambulance had been called and would be with me shortly. I knew then that Andrew would not be home in time, so we decided that my dad would come and pick Andrew up and they could drive down together, dropping off Seb on route, and hopefully arriving in time.

I then had a call from ambulance control to say that they were very busy, so were going to fly me down instead from Glasgow Airport - which is where Andrew’s flight was coming in! On landing, Andrew realised there were about 20 missed calls from me and phoned straight away -we decided then that he would try and find out where the air ambulance would leave from and meet me there. An ambulance came and took mum and me to the airport, and when we got there Andrew was waiting with the crew – I felt so relieved. It was confirmed that both Andrew and mum could travel on the flight, so poor dad was left to travel down alone. The flight took about 35 minutes, compared with a potential 3-3.5 hr journey by road and it was pretty amazing flying into Newcastle and seeing it lit up at night. An ambulance was waiting on the runway to take us directly to the Freemans hospital.

On arrival at around 10.30 pm we were met by the transplant coordinator,who got us settled into a room and explained what would be happening. I had to get some blood tests, chest xray, temperature checked and a brief examination by the doctor to make sure I was well enough for the operation and that there was no evidence of acute infection. At this stage all we knew was the donor lungs were a good match but we did not know if they would be suitable for transplantation. The retrieval team were expected to arrive at the donor hospital around 11pm and procedures would commence to inspect the lungs. In the meantime we settled down and just waited.

At around 12am I was asked to have a shower and put on a surgical gown and at 1am the coordinator informed us that initial inspection of the lungs with bronchoscopy (camera) were very positive. We then had to await the final go ahead while further testing of the lungs took place. Excitement and anticipation would give way to waves of apprehension as the prospect of major surgery loomed but at the end of it the prospect of a new life glittered.

At around 2am the coordinator appeared with a trolley to say he had the go ahead, and I was going to theatre now. As I was wheeled down the ward I saw my dad walking towards us – I couldn’t believe he has made it with seconds to spare. Outside the doors to theatre I gave everyone a final hug, and in my thoughts asked Frances Ann to now watch over me.

I had some lines places and monitors attached before I was given the anaesthetic for what was expected to be a 6-8 hour operation. My anxieties melted as the drugs took hold, and I drifted into sleep.

Next thing I knew was waking up in ITU at 6am. I was intubated so couldn’t speak and my chest was throbbing. The transplant coordinator was standing by the beside repeatedly saying to me “Jacqueline, you have NOT had a transplant”

…More to follow

I'm still doing ok. Have been a bit more tired and breathless this last week, but that's to be expected when I've had a while off IV's. I've also been feeling quite sick off and on, which is starting to curtail my intake of food. I often feel sick when I have an infection, so will need to keep an eye on this and won't let things go on too long if it looks like something is brewing.

Otherwise life has been very quiet. It was Andrews birthday on Saturday so we went out for a meal and I allowed him to watch the rugby without interruption. I say allowed, because I normally do quite a lot of complaining when its on TV. I just don't really get it - a whole load of men rolling around on the grass, with some occasional grabbing of each others shorts (which is apparently part of the game). Although I must admit its much better than football, where they just kick the ball up the pitch and just when you think a goal might be scored, they kick it out! And so it goes on. An entire game can pass without anyone scoring a goal - what's that all about?! I think you can tell I'm not a big sports fan....

Seb was trying out something new yesterday. I popped upstairs for a few minutes and was coming back down on the stair lift. On my way down I could see into the living room, and there was Seb, lying stretched out in the middle of the glass coffee table. Obviously I squealed "Se-eeeeb! Get off!" However, as the stair lift moves at a snails pace, I had to just watch as he waited a few moments before casually standing up, doing a few large cat like stretches, and finally jumping off to come and see what all the fuss was about. I suspect he jumped up there to try and see out the window, but then thought he would test it out for napping whilst he was there. You really can't leave him alone for 2 minutes..

My cousin Bobby is running the Edinburgh marathon in aid of CF. There is a link to his justgiving page at the top of my blog for those of you who know him and would like to show some support :-) For those of you who don't know him, he is a strange (old) man who likes to think he is my favourite cousin (ideas of grandeur). I don't like to tell him otherwise. He is nice all the same, and would appreciate any spare pennies for his justgiving page...

Exercise....at last!

I moved out of my exercise contemplation stage yesterday, and finally attended my physio for an appointment. We did a few minutes on the bike and some upper body weights, before attempting to join part of the cardiac rehab class, who were doing their warm up. I did manage to do some of the warm up, with a rest every few minutes, but overall I think I did quite well.

The one thing I did learn from this session is that I am terribly uncoordinated, and even the physio had to agree with me. I think my dream of taking up either salsa or ballroom dancing classes shall remain just that. A dream. I think I have mentioned my inability to do leg squats before - I just can't do it. Instead I do this kind of pelvic thrust motion, which is not very lady like and sends both myself and the physio into fits of giggles. I must practice in front of a mirror before my next session. The other great source of hilarity was the woman who fell off the treadmill. I thought she had collapsed at first, as she just fell suddenly prostrate, onto the moving treadmill. She then just lay motionless as the treadmill continued to move and slowly transport her onto the floor. Where she then lay motionless again. Needless to say my physio ran over to help the poor woman, who had to be given a glass of water and a chair, before she could overcome the shock. It turns out the treadmill has been pre-set to a programme which moved through different speeds - so when it suddenly changed pace, the woman wasn't expecting it and lost her balance. I know it wasn't very amusing for her, but I did have a sneaky chuckle to myself. Terrible sense of humour I know, but if you had been there...

I am now finished my distance learning course and am pleased to say I have passed it. I am still working on the CF relationship project, which is keeping me fairly busy, but will need to think of some more projects to keep myself occupied. I was looking at the OU again, and there is a digital photography course in May, which looks quite interesting. Although Andrew did kindly point out that I would need to expand my subject matter beyond birds and Seb. I don't see why. And just to be obstinate, I will leave you with some photos of birds and Seb...

Sleeping Beauty

Robin (yes, we had snow!)

Lesser Redpoll (quite pleased about this one, as they don't commonly visit gardens)