Some things I have written:
Organ Donation Saved My Life. Sunday Girl. Issue 7. Dec 2018
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 events, 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 huge ones; 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 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 yet the while I would never be ashamed of my scar; it shows the journey I have been on, I don’t always want to be reminded 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.
Just one small example but maybe a little more relatable then some of the ‘bigger’ issues and while “Don’t sweat the small stuff.” that well known phrase, could so easily be applied and might make it seem ridiculous that faced with transplant recovery, and everything that comes with it, that I was worrying about the cut of my top, if people would notice my scar, where I could or couldn’t go on holiday in the future and what I could eat but the reality is that this stuff matters. The small stuff is what makes us who we are regardless of what we have been through.
I will be forever 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.
Why Niki Laud’s Lung Transplant Could Help Many More Than The Man Himself. Huffington Post. August 2018.
I’m going to be honest and say I hadn’t heard of Niki Lauda until this weekend. I’m not an F1 fan and other than accepting that it’s on in the background courtesy of my dad or boyfriend sometimes, occasionally wishing I could go VIP to Monaco Grand Prix (mainly for the party) and knowing that Lewis Hamilton once dated Nicole Sherzinger my knowledge is pretty much zero.
But on Friday this temporarily changed.
Niki Lauda, Austrian Formula 1 legend, had a double lung transplant. Now here’s something I do know a lot about after being lucky enough to have had my own double lung transplant last April at Papworth Hospital in Cambridge.
Lauda reportedly had his transplant after falling ill on holiday in Ibiza in mid-July. It was reported that his condition had progressed and caused severe pneumonia. An appropriate donor was found in Hamburg, Germany and flown to Vienna where on Thursday 2 August, the F1 legend underwent the surgery.
So, initial issues in July to operation in August. A mere two months. And while I am sure it did not feel like a short wait for Lauda or his family, the reality is that in comparison to most people waiting for an organ transplant this is a minute amount of time.
On average in the UK according to Organ Donation UK, individuals will wait 18 months for a transplant from it being deemed medically necessary. This wait can be shorter for a lucky few but it can also be much, much longer and people often die waiting for a transplant. In 2015 it was revealed that in 10 years, over 49,000 people in the UK had to wait for a transplant and that over 6,000 had died waiting for the operation.
Organ donation has been in the news lately in regards to possible future opt-out systems for donations, but I wonder how many people are aware of this outside of the medical, transplant and associated community? Probably not as many as read the sports news. A quick search engine trawl showed 5,810,000 results for Lauda and while not all of these stories will be recent thousands are. These articles will, over the last few days, have amassed millions of hits yet while mention of details around the transplant is varied it is largely scarce, often plays down on the severity of the surgery or barely mentions it at all. I am yet to read a piece which mentions the fact that Lauda was lucky to have been able to have a transplant, lucky that a match was found, and he didn’t have to wait, possible longer than he had.
So, while I know this blog won’t have the gravitas of most of those pieces I would urge anyone who is able to consider signing up to be an organ donor. It might not save a celebrity’s life, but it could save the life of a mother, a husband, a sister, a son, of one of over 6,000 individuals in the UK alone who has run out of other options and is waiting for that call to let them know that their second chance has come. It takes two minutes: www.organdonation.nhs.uk.
Now What Can I Eat Cookbook campaign – some media coverage:
NWCIE Cookbook campaign – some social support: