I made it home. Gosh that feels good to say. There was a point where I saw myself never leaving my hospital room again. I sit here and wonder how we've managed it, I say we because the transplant team, nurses, physios, everyone played their part in getting me home. It's taken hard work, perseverance and pestering. I think it's fitting (especially with Mothering Sunday round the corner) I mention someone else that's HAD to play their part. Since transplant it has been a learning curve for my mum, pre transplant I wasn't on feeds, I didn't have a PEG or a port and towards the last 12mths before my transplant I wasn't in hospital (because there was nothing they could do but I did spend time in the hospice). Since coming home I'm on 6 IVs (steroids and an antibiotic called Meropenum), 12 nebulisers, 60 tablets a day plus oramorph, PEG feeds and fluids and a subcut Nozinan infusion (as antisickness not for psychosis!), the latter is the only thing that's looked after by district nurses. My mum is in two full time jobs, one as a carer everything from getting me dressed in a morning to washing my hair at night and the other as a nurse preparing IVs, sorting through my 40+ medications and ensuring I'm getting enough oxygen. I mean it when I say I don't know how she does it or where at times she finds the energy. If it wasn't for her I'd either still be in hospital now or I'd be in some form of care home somewhere. It deeply upsets me when her friend's say "can you just do this? I know you have alot of time on your hands!" My mum is my rock and I think it's fair to say I wouldn't be where I am now without her.

On March 11th I celebrated my 1yr Transplant anniversary. On the 10th I lit a flameless candle for the donor and her family on, a year ago a day that would have been one of the saddest days of their lives and I left it on for 24hrs. On the 11th I celebrated. I celebrated the fact that without my donor I wouldn't be here now, love, giving and new life. I had mum get me green helium balloons and we wrote messages on them, I ventured out of my room with mum, my nurse and physio to release them in her memory. We put annivesary banners and balloons up in my room and we celebrated and gave thanks. My physio took the snap, it would have been a good one if my eyes weren't shut!
Maybe I'll blog again in a few days when I'm settled in at home a bit but I think that's all I have to say for now :)

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 :-)