Life is what you make it

I came home (properly) on Wednesday. So much has happened over the past 2mths, some of it somewhat unbelievable. Since being home I haven't really done so much, adjusting to life with a PEG tube is taking time. There's alot of maintenance at the moment because it's still new but I'm already feeling the benefits of improved nutrition. It's funny, you don't realise how much your lacking in the essential things, like that, until they're given back to you. I hadn't realised just how bad poor nutrition was making me feel.
Yesterday I went to the funeral of another lung transplant patient. He died suddenly on the ward last week, it was somewhat unexpected. He was transplanted around the sametime as me and lived not too far away. The funeral was of course upsetting, for me personally it got me thinking about transplant, life, death and everything inbetween.
A comment recently got me thinking too. Someone said "you must be proud of how far you've come". Am I? Not really, what do I have to be proud about? I've just doing the best I can with what I have which is what anyone would do, the fact is I have a whole lot more now to make the best of. I'm not proud, I'm just doing or have done what anyone else in my situation would have because really what options do I have? Realistically I can't stamp my foot and pout my lips and say 'no I'm not having that bronchoscopy and I won't take that medication'. The transplant was do or die for me. It isn't that way for everyone, some people have a choice on if transplant is right for them, for me, in my mind there was no other option, the alternative to transplant, well to me there wasn't one. I was not ready to die, I was determined I wasn't going to die of my lung disease and I was too stubborn to sit back and let it kill me. Maybe it's my stubborn streak that at times keeps me going, I don't know but I do know what are sometimes considered negative aspects of people's personalities have helped me along the way and kept me grounded and realistic. I don't have unrealistic expectations of transplant. I never wanted to run marathons or jump out of planes, don't get me wrong the lung function to be able to do that would be nice but I didn't have a transplant to become an athlete or an adrenaline junky. I had one to save my life and that's just what it's done :-)

are you ok?

I've had so many people ask recently how I'm doing and besides "ok I got a port put in today and I'm to have a peg soon" I haven't really been able to explain how I'm actually doing. I guess the best part of all of what I'm about to say is I'm doing better than I was 5wks ago. Before I went into hospital I didn't even have the breath to stand up at the sink for long enough to brush my teeth and wash my face, the day I got admitted mum had to put a stool in front of the sink for me. I was bad, I just hadn't realised how bad.
Now I'm going to try and explain what's going on, as best I can anyway. A few weeks ago I had a lung biopsy to confirm if it was rejection, I didn't think it could be anything else but the biopsy was negative, NO rejection. The biopsy (and CT scans) showed inflammation and scarring or fibrosis. Basically something has injured my lungs (we aren't 100% sure what and we may never know now) and it caused inflammation which in turn caused permanent scarring. This isn't going to go away, nothing can be done for fibrosis. The hope is now that whatever caused the injury was acute and it isn't something that is going to continue injuring the lungs. The problem I'm left with is my lungs are once again scarred, they're never going to be normal, scarring doesn't go away. All I can do is build up my exercise tolerance as much as possible to maximise what I can do with them. I'm still on oxygen, I don't know when or if I'll come off it.
I guess what I'm focusing on through all this is this isn't ideal, far from it but it's better than the situation I was in pre transplant. I feel better than I did pre transplant, I have my days but everyone does, my life has already been extended as far as I'm concerned it's already been proved that transplant was the right decision. I don't know what my life is going to be like from here on out but I don't really care because I'm alive and that's all that really matters...