It is unbelievable how much better I've felt over the past few weeks. Compared to the months (and months) before that I feel like an entirely new person. Such things are subjective right enough and I still get tired after exerting myself but the fact that I can actually do things that merit exertion is proof positive that things are so much better for me now.
With the notion of making hay while the sun shines in the back of my head I've been going out with friends, visiting others for dinner with their families and arranging for others to visit me here. I've also made it out for my newest niece's Christening and am recommencing my guitar lessons.
My only gripe about the day of the Christening is one that I may be repeating from before but it is just a sad fact of being in the chair. It's hard to just mingle at any event I'm at in the chair because I really am just tethered to the one spot and I have to rely on getting the attention of everyone I want to speak to and to get them to come over to me for a chat. I managed to get some time with pretty much everyone I wanted to but it would be so much easier if I could just get up and walk over to them and instigate a chat.
My abilities, or lack thereof, came to mind on Sunday just past when an old school friend came to visit for a while and she was getting me to explain just what my tolerance levels and thresholds are before I start struggling. She was also getting me to explain how it feels when I do start to struggle too, which was really nice in its own weird way because there are very few people who genuinely want to understand my situation over and above their own concept of breathlessness. It reminded me somewhat of back when I was first let out of hospital after the bone marrow transplant and I went to mass still completely bald and with a feeding tube up my nose. It was there that I bumped into this same friend's mum and dad and they were pretty much the same - they asked genuine questions about how I was getting on and how I was feeling. I can see where she gets her compassion from. I was also talking to her about how, even though it's nearly 6 years that have passed since I first walked into the hospital in Liverpool, that the time has passed quite swiftly in my head. I hadn't thought of it this way before but just through the passage of our conversation it occurred to me that this quick passing of time is actually down to the fact that my days are all fairly similar whereas normal people have many more individual events to punctuate their time and so can easily create a chronology of events when looking backwards. For me looking backwards my days of being in bed are only given individuality by what TV programme I'm obsessively watching at a given time and those days are punctuated by the odd important hospital visit.
I'm trying to get more people to visit just now and I'll be badgering some other friends to maybe take me out places as well seeing as we have a bit more daylight now and the weather isn't quite as awful as it has been. In retrospect I have to say this winter has been the toughest one on me in years. Like I said in previous posts it's been down to infections and meddling with medicine this year but I do worry about winter every year as there are just so many infections about that it terrifies me. Not just from the point of view that it's dangerous for me but that it would be horrific if they finally found a match for a new set of lungs and I couldn't receive them because of some poxy little infection.
The transplant team were in contact just over a week or so ago, which is a rare thing indeed. They normally only contact you if they have a potential match, but my co-ordinator was on to tell me that they had Channel 5 in the ward making a TV show about the trials and tribulations of a lung transplant and they were looking for a patient's view of proceedings and so, as happens when things like this arise, she instantly thought of me so I have to expect a phone call sometime soon from the producers of the show to see if I am indeed what they're looking for. I might not be simply because my case is so different from the norm for patients undergoing this surgery. Remember the patients in the same boat as me are mostly Cystic Fibrosis patients so it might come to pass that they want one of them to represent the patients, which would be fair enough.
That was the good part of the phone call. Sadly the co-ordinator told me how frustrated they've been getting trying to find a match for me. Now on the surface that sounds really good as they're always keeping me in mind but I found it a little upsetting. You see, it doesn't matter if you get close, you still can't get them. You'd be as well as not matching any of the variable factors than just missing out on one. It's just so frustrating to hear things like that. Having said that one of the great things about this search for new breathing gear for me is that no set arrives knowing what has come before so fer every set of lungs that is donated my chances of being a match are just the same as they always were, so it really is just a matter of staying healthy and eventually a match will be found.
