Most people couldn’t imagine their life hanging in the balance aged 27 but a little over 18 months ago this was my reality. I was waiting for a double lung transplant, after living with Cystic Fibrosis since birth, and without it I am fairly sure I wouldn’t be here today.
Thankfully I did get the chance to live, many don’t. My donor, younger even in age than me but whose family made the selfless decision, in choosing to say yes to organ donation, allowed my life to continue.
While surgery like this, or any life changing event, obviously comes with a whole host of considerations, for me the ones I often found the hardest were those which took me by surprise, the less medically related, more individual and less easy to predict.
They weren’t the cancer diagnosis (thankfully caught and treated early), the adjustment to the need to follow an even stricter and lifelong medical regime, the multiple hospital appointments. Not that I’m going to pretend they were easy but these were the ones with specialist teams on hand to guide you, to offer advice and insight from the many patients before.
It was the adjustments in food, working habits, shopping habits, my emotional state and my aspirations for my long-term future on a practical level that I have found, and I’m sure will continue to find, often knock me the most – the adjustments to life as most people know it.
Getting back to ‘normal’ was immensely important. But what was normal? Probably not my life pre-transplant where despite struggling with my ever increasing health issues, even a few months prior to the operation I had been working 9-5 or in reality 8-6, living with a friend from university and, like most twenty somethings living in London, spending any of my wage that didn’t go on rent, bills and public transport on going out, eating, drinking, holidays and shopping.
As soon as it was conceivable post-surgery, and probably even before then, I was itching to return to my life, to move in with my then-boyfriend, now fiancé, and grow into our lives together, to go shopping with my friends and go out for meals and drinks. I was so aware that at some points this opportunity had hung on a thread and now that thread was becoming stronger I was keen to move on from the tough times and enjoy it.
Sometimes it was the simplest things that would catch me off guard. For example, the first time I properly opened my wardrobe post-op, not just for a clean pair of pyjamas or a pair of jeans and a trusty Breton top (my recovery staple for months) but when I actually wanted to get dressed, I realised that the majority of my tops and dresses showed the large 10 inch scar down my chest. It was approaching summer and I didn’t want to have to wrap up. While I would never be ashamed of my scar, it does show the journey I have been on and I don’t always want to be reminded of it, or for others, strangers or otherwise, to see it. It’s something I am sure many people would brush aside as a minor insecurity, but walking into clothes shops I now discount probably 50% of clothes due to the neckline.
Next time you go into a shop look around. In your immediate sight how many things are v necked, low cut or strappy? It’s not something you notice until you can’t wear these things anymore and while I know others don’t or can’t wear certain things and it’s a choice I’m making not one being made for me it’s a point in my recovery journey no doctor would ever discuss.
That’s just one small example but perhaps a more relatable one than some of the ‘bigger’ issues I have faced. While that well-used phrase “Don’t sweat the small stuff” could so easily be applied, the reality is this stuff matters. The small stuff is what makes us who we are regardless of what we have been through.
I will forever be in debt to the strangers who allowed me to worry about these little things by saying yes to organ donation. If you haven’t already, please think about if you would do the same, chat to your family and friends or register as an organ donor online. It might not be the easiest conversation but it could save lives.
This post first appeared in Sunday Girl Magazine and is reposted here with the author’s permission