A couple of weeks ago it passed the 6th anniversary of my falling rather dramatically ill with the fungal pneumonia that ultimately led to my complete respiratory breakdown. As is common, for me at least, when these sort of dates swoosh past I find myself musing about what has happened in that time.
There have been some tremendous dramas. I'm thinking mostly of the times when I've really scared people, mostly but not exclusively my poor wee mammy and my younger sister who have witnessed the worst bits. Those were the couple of occasions where I collapsed at home and needed to get taken to hospital. Both these occasions were well after the pneumonia and even after the swine flu/viral meningitis period. Those times scared everyone plenty but I was still fairly strong when fighting those off. These collapsing incidents were when I was placed on a massive dose of steroids to hopefully shock my body into not attacking my lungs any more. They never worked, and you could in fact argue that they made things worse as they moved forward the time when I needed 24 hour oxygen therapy. The steroids had affected my diaphragm in some way and I was struggling to force air into my lungs.
The first time I collapsed I just felt so terribly weak and knew even on the walk to the bathroom that I wasn't going to make it and I collapsed on the tiles just at the door. My mum ran out her own room to find me completely sparkled on the floor. It was so upsetting for us both. The second time I collapsed was in its own ways quite impressive as I managed it from a sitting position. I knew I wasn't feeling right after another dose of steroids (these 'shock' doses were ten times the dose I had been on post Bone Marrow Transplant) and had phoned the hospital to say I was coming in as I couldn't breathe correctly. Before going in I wanted to have a shower though as the steam of a shower often helps me breathe a little better. I was sitting in the bath letting the shower run over me and all of a sudden I couldn't get any sort of breath at all. I managed to turn the shower off but I was still gasping and I could hear my mum and my sister on the stairs outside so I just battered on the side of the bath to get their attention. My sister ran in and got the towels and wrapped them round me and talked me into taking long, slow breaths till it passed and I could catch something resembling a breath again. I was absolutely fucking terrified. I figure that's what a panic attack must feel like.
Both these instances were about the worst I've felt in these past six years as, if I'm entirely honest, I did wonder if I would ever recover from it, especially as I was frighteningly underweight at the time too. I was only 41kg, which is ridiculous and I was scared I didn't have great reserves of strength needed for the fight.
When I let people know of my situation back then, and how grave it was, they all flocked to see me. I think the fact I was terrified had shone through in my correspondence with people as everyone was quite sombre when they came in. I really was in a very bad way. The first step to getting better and improving my chances of being put on to the donor list was taken then and the very next day we got the PEG tube fitted into my stomach so I could get fed even when I didn't particularly feel like eating. I'm genuinely not being dramatic when I say that little piece of plastic tubing saved my life. I couldn't have fought off another infection at that time so putting some weight on was absolutely the priority.
From that point it took another two years before I was heavy enough and strong enough to be considered for transplant. It took lots of serious investigation into all my internal organs which were essential for making sure my health was otherwise good. Back then it was a busy time with lots of hospital trips to get assessed for one thing or another so I always felt like I was pushing towards something. It's actually the time since I made it on to the active transplant list that has been the more challenging as you wonder every single day whether this is going to be the day you are going to get the call.
These past few months have been hard on that front. I have been getting so frustrated that things aren't moving forward and it has definitely affected my mood. I think I may have a mild case of depression as I often feel completely apathetic to the notion of doing anything. And so days can go past without me doing anything of note at all, and then I give myself a hard time for not doing things, especially when I know I always feel better when I have done something, no matter how trivial. It's a shite state of affairs and no mistake but everyone I've told seems to have the same response. They have all said something along the lines of 'Of course you have, you wouldn't be human if you didn't have at least a little bit of it'. That makes me feel a little better.
When I think about my life as a grown up it does make me kind of sad at times though. When you consider the last fifteen years of my life I have been seriously ill for over eight of them. That's devastating but I console myself that I did a lot in the other years to make up for it. Hopefully a successful transplant will give me another serious run at a normal life. There's no reason it wouldn't but reading other patients' stories sometimes leads to worry about the post transplant life as some of them are still massively dependent on their doctors for everyday life. I have to factor in that these are almost all Cystic Fibrosis patients though and so are, in many ways, more complicated than my own story.
All things considered I think I'm just about handling life on the transplant list well. I get plenty of positive comments to that end anyway and I trust the people that tell me so aren't just saying that as they're not the type to sugar coat things. I simply hope I won't have to cope with it all for much longer though.
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