Post transplant life

It is of course bank holiday weekend and so obviously I have too much time on my hands!
I wanted to talk about post transplant life and I guess the necessities of it.
I'm going to start by saying it is NOT easy. It's harder than I ever imagined it to be and I think than I was even prepared for. To be honest nothing, no book or leaflet could have ever prepared me for post transplant recovery and life. I've been asked if I'd like to give talks on my experience and recovery, I don't think I could, nothing I could ever say would prepare someone for the recovery I had. Having said that my recovery from the procedure was not exactly straight forward, everyone's experience is different. Alot of what the recovery depends on is physical, mental and nutritional well being at the time. Physically having muscle and energy is so important, at the time when I went into transplant I was dependent on a non-invasive ventilator, I was able to do very little exercise wise, though that didn't stop me trying to do yoga on the Wii! But my muscles generally were very deconditioned and my respiratory muscles were unable to support me and my breathing post transplant, as a result I needed an extended stay in the ICU whilst I recovered on the ventilator with a tracheostomy.
Mentally I wasn't in a good place, facing imminent death at 22 does that to you. I was getting no extra help or support mental health wise and I think I'd have benefited from that.
Nutritionally I was able to eat very little and lost exactly half my body weight in the run up to transplant, food seemed to bloat me up and made it feel impossible to breathe. I was prescribed yucky milkshake meal replacements but they made no difference, I just had no interest in food itself or even trying to maintain good nutritional status, it just didn't rank high on my list of worries. Then trying to eat a full meal when it seemed so alien to me post transplant was hard, I was supported via tube feeds and still am today.
Anyway recovery is on going and the first year out of transplant is the most difficult. I wondered if I'd ever actually get stable and well again. Now things are more controlled, we have plans in place should things go wrong anyway, that's more than we had last year. Not only that but I now have confidence in myself, I know my post transplant body very well, I'm learning all the time what's normal and what isn't. Post transplant I explained (not easy with a trachy!) that my right lung didn't feel right, it felt 'heavy' my doctors were puzzled and did a bronchoscopy to see if there was anything there. My right airway had narrowed to the size of a pin head and I needed to go to theatre eventually to have it widened. Last year when my lung collapsed, I was in clinic once a week almost 'moaning' things weren't right yet my chest xrays were unchanged. Eventually I was given a CT scan and there it was, my right lung had collapsed, I ended up with a chest drain for 6wks and eventually the lung had to be 'glued' back up. I can predict a spike in my infection levels before its even visible on blood tests. Doctors actually ask me "Rachael is your CRP up?" and I can answer before the blood results are even in and I've not yet got it wrong.
Post transplant life generally revolves around three things, treatment, support and getting out and having the confidence to live it. Treatment I've already touched on recently, my treatment and drugs are increasing all the time. Before my transplant there was nothing I could do to help myself except for what I've mentioned above but I mean drug wise. There was nothing I could take to relieve or help my symptoms apart from what I call 'the dying drugs' like oramorph and diazepam which were there to make life easier rather than treat my rare lung illness. Now post transplant there seems to be a drug for everything, I guess it shows how much time and effort has been put into post transplant medicine which is improving all the time. Pre transplant nobody understood my lungs or lung disease so there was nothing they could do about it, we had to sit back and watch it slowly take my life. Now I have an extensive drug list and it requires a very strict routine to get it all taken and done on time. But it is something I can do for myself to keep myself well, I've never had to work so hard in my life to actually stay alive but it makes me feel like I'm in control of my situation. I could sit back and say "I'm not taking that or this, I don't see the point it doesn't make me well". But I don't, I choose not to. Myself and mum work extremely hard to maintain a good regime, I may not be 100% on time with every medication and every nebuliser but I don't ever miss a drug. And the support I have from mum to unable me to do that is vital.
As is the support from my friends. Without them, well I guess life would just be boring? They're there for me and keep me going when things are tough. Some days when I really don't feel like smiling a flying visit from a friend is the pick up I need. I know my friends have their own lives and can't be here as often as they'd like but when I do see them it then makes the catch up even better! I got a visit from a close Internet friend recently, we met online some 4yrs ago and she's been a constant support to me since, right now and she's on a tour of the UK and she dropped in with her 'mom' to see me. I think my smile in this picture says it all :)
And finally the confidence to get out and live life. I have my limitations again, I'm on a stupid amount of oxygen and my breathlessness is at times worse than before my transplant. I have to plan my 'moves' carefully in my head like playing a boardgame. "Next move sofa to stairlift, rest, next move stairlift to bathroom". That really is how limited I am, I couldn't sit on the sofa and just get up and do something, say for example the doorbell rang, I'd need to swap my oxygen over to a higher % mask, take some deep breaths and then get up and pace myself to the door, I can't take more than 15 steps in one go, that I already know from advanced planning! Some days I have to dig so deep to find the trust and confidence in myself to even make my 'moves' but I find it, I have to because living in my bedroom 24hrs a day would ruin me mentally. I think that's all I have to say on post transplant life. Hope you enjoyed my rant!