Having been on the transplant list for five months I'm still getting used to being on the list and still have conflicting emotions every now and then as to whether I'm doing the right thing.
These feelings were put to the test on the morning of Tuesday 17th March when I was woken up at 5.50am by what I thought was Tim's work alarm going off extremely loudly. My initial slumber induced reaction was 'Why the bloody hell is Tim's alarm SO loud?' I tried not let it wake me up and then
This time, a voice at the other end of the phone asked me if I was Jayne (yes), said they were the transplant coordinator from Harefield (oh dear god), asked how I was (nervous now they'd called me) and casually mentioned that they had some potential lungs for me (ohhhh, this shit just got real). I looked at Tim and sort of mouthed the words 'new lungs'. At this point I was filled with a sense of trepidation that I can't really describe. I mean for goodness sake, I hadn't shaved my legs for over four days and I had a mountain of washing to do. I asked the transplant coordinator if I had time for a shower. I was advised that I should just make my way there but have a cup of tea first. Good plan. I looked at my husband who probably felt as groggy as I did and realised that potentially everything could be about to change. We held hands through the call and it kept me calm.
Tim went to rouse the teenager which to be honest would probably be one of the greatest challenges he would ever face (waking a teenager) and then he put my pre packed transplant case on the bed. I started to chuck in every conceivable charger that I ever owned, demanded that Adam go and find me some hair conditioner then packed every single piece of make up that I have. I rarely wear make up. Why would I need make up? It seemed important at the time. I packed everything from my bedside table and my top drawer. Then I progressed to pulling some clothes on, 'what the hell do you wear for a transplant call?' were the words that I muttered to myself. I phoned my mum to tell her I was popping round to drop the dog off. The dog looked terribly confused by the early morning activity. She looked positively scared by the sight of a fully dressed seventeen year old before midday.
We somehow got everything in the car, and then Tim handed me three flasks of tea to hold. Bearing in mind Adam (teenager) doesn't drink tea, I was a little confused as to why I had to hold three flasks of the stuff. 'They said make tea,' explained Tim, 'so I made enough for the whole journey.' It was splashing round everywhere on the way to my parent's house. By the time I got to their house I was a bit stressed, tea everywhere with a dog who was so confused that she forgot to bark. This was getting more and more surreal by the minute. My dad opened the door and I instantly handed him a flask of tea, 'I can't drink all this!' I exclaimed and acted as if I was off to a clinic appointment.
Then we began the journey to Harefield hospital.
As I left the house it occurred to me that I may not actually ever come home. Having lost a few friends post transplant last year, you can't help have the occasional dark thought. It is quite sobering, especially when you're trying to remember if you locked the patio door. As our journey progressed I decided that I was ready for this. I could be home well in time for summer and enjoy planting the hanging baskets and tubs which is my favourite time of year. The positive thoughts I had at the prospect of what might be about to happen actually surprised me. No more breathlessness or pain. I've always had trouble accepting that I'm 'transplant ready' which is a totally normal response. It's apparently rare that people who need transplant actually think they need one.
When we got there, we were unfortunately told that the donor lungs were a 'no go' and they had to step down due to an unforeseen problem. It was very deflating and at that point we didn't really know what to say to each other and didn't know what to do with ourselves. We went to to the canteen and had tea (I'm not joking) and I said that we should all eat a cooked breakfast. We all ate the full works in the unassuming surroundings of the hospital canteen. It was weird. It was surreal (the whole experience, not the food). We got home by midday and the teenager went to college and Tim logged into work.
It wasn't until the next day that it hit me. I could have been waking up to new lungs, but instead I was doing the ironing and telling the dog off for barking at the postman. Nothing had changed and yet everything in my mind was mixed up. The simple fact is that life goes on as normal and now we hope to get another call.
It took me a few days or so to recover from the experience both mentally and physically but a lot longer mentally. I was stiff and ached from head to foot for a few days and I think it was because I must have held myself funny in the car on the way there and not realised how tense I was. The main thing is that we all remained calm, even me. My main worry now is what if next time I'm not well enough for transplant? What if I don't get any more calls? Etc. I guess you can't think like that. It's easy to focus on the negative. Much better to think of the good things. Summer for instance. Tea. Cooked breakfasts.
I'll let you know if anything else happens.
Over and out.