It is 5 months today since I was put on the transplant list and started the countdown for new lungs. I've been aware every month since July how long I've been waiting and realise only too well that most people in my position wait a lot longer (often 1 1/2 years +). Yet it never fails to surprise me, that its been only a matter of months it feels much much longer.
I was thinking about this last week and, looking back on the last few years I realised that I'd been going down slowly for quite a while now. I suppose it is easier to see in hindsight and I've always been good at hiding how much I struggle from other people.
I can now remember various situations where I worried about how far I'd have to walk or if there would be steps to climb when I went out, I just do it too more of an extenet now. The last year of 6th form was when I noticed this most. I used to miss registration so i could take my time getting to my next lesson without having to rush or be breathless in front of people. On my 10 min walk home I would often sit on peoples walls to catch my breath and fall in my front door at the end. Don't get me wrong, I've always known I did these things but can see it more clearly now than before. Its strange.
Next Saturday will also mark an anniversary of sorts for me. It will be one year since I fell very ill on my way to work one morning and had to be taken to hospital. To me, this was a real turning point. I had been REALLY struggling for a long time but the drs had been trying various things to help me out and I figured they would hit on something soon that would do the trick. Nothing was working and it was a very stressful time when I worried all the time and felt mentally exhausted. I didn't use oxygen or a wheelchair and would have been royally offended if you'd suggested I should!
On that day however I'd been ill for weeks but was enjoying my last week of work before xmas break. On my way to work I collapsed from being so breathless and a teacher brought me home. We drove up to my hospital in London and I was so scared I didn't know what would happen to me.
I hate needles and knew I'd need intra venous drugs but I can honestly say I just wanted anything to make me feel better. I asked for oxygen and a wheelchair because I just couldn't manage to get to the ward.
It was an awful time but I wasn't actually in that long and once I was stablised I got home for xmas. But it was a turning point for me in alot of ways. I realised I needed to do what was neccessary to help me, oxygen, wheelchair, etc,that I was tired of struggling so hard and that I never wanted to feel like that again. It was also the time I realised transplant would be the next step. Something had changed physically inside me, I'd gone down a level in my health and this was the new norm.
It must be hard for people who haven't experienced something similar to understand but its as though everything you've known is different.
It made me realise what a difference a day can make for better or worse and the day I get my transplant will be the day it could change for the better again.