Some things I have written:
Two years since my lung donor saved my life, I wish more people wanted to do the same for others
The Independent. 14th April 2019
(Click image to link to article)
Thousands of people in the UK are waiting for a transplant, often in similar situations to mine. But without more people registering as donors, many of those may not be as lucky as I was
Two years ago I got a call, that call would not only change my life but save it.
It was Friday 14 April and by that point I was on oxygen 24 hours a day in the hope that it would keep me alive long enough to receive that phone call and, along with it, the double lung transplant that would follow just a few hours later thanks to my donor and his family.
Sadly though, this happy ending isn’t the reality for everyone on the transplant list. Too many people are dying waiting. Viable organs aren’t being transplanted. But why? Because people have not registered as organ donors, or let their family know their wishes.
But by having a simple conversation or spending a few minutes documenting our wishes just in case the unthinkable happens, we could help reduce the risk of leaving vital questions like these unanswered.
I was born with cystic fibrosis, but I was lucky that for most of my childhood and young adulthood I had remained fairly well. Although I was nearing the average life expectancy of someone with cystic fibrosis (around 37 years), being sick wasn’t my normal.
Thanks to the determination of my parents to keep me well, I was still able to live what I think most would consider a very happy life, largely void of medical issues; progressing through school, studying then working, enjoying holidays, two gap years and the independence of living in London as a young adult.
But my health slowly declined and by November 2016 the life I had known started to crumble around me as infection after infection meant I could no longer survive with the lungs I was born with.
I spent most of that time in hospital and then at my parents’ home as I fought, with the support of an amazing medical team as well as those closest to me, to get well enough for the chance to live.
I could no longer walk across the room, let alone live independently. I wore a mask to force oxygen into my lungs and was on a constant stream of medications. A transplant was my only hope.
At the last count, at the end of March 2019, 6,093 people in the UK are waiting for a transplant, often in similar situations to mine, and the sad reality is that many of those people will not get the call that I did in time.
In recent months, the law has changed and from 2020 organ donation will become an opt-out system, but there is a very real fear this will, in fact, not have as much of a positive affect as people might expect.
The worry is that people will no longer register as organ donors or discuss their wishes with those closest to them, believing the decision has already been made for them, unaware that the law is actually not in action yet and won’t be until 2020. There are also fears that family members may not choose to offer organs for transplant if they do not know the deceased relative’s feelings.
Obviously, I wish that situation on no one. I know first hand how difficult it can be to discuss the possibilities of death and the practicalities around it with people who love you, but I urge everyone to at least consider doing it. Lives quite literally depend on it.
Organ donation can only happen in a small number of cases. Around 500,000 people die every year in the UK, yet only around 1 in 100 of them die in circumstances where they are able to donate their organs. But one person’s death could potentially save the lives of up to nine people; people who are daughters, mothers, husbands, children and friends who, through no fault of their own, have run out of options.
As someone with cystic fibrosis I’m not sure I want to see Five Feet Apart – but you should.
The Guardian. 22nd March 2019
(Click image for link to article)
My illness is often misunderstood but Hollywood’s take on a romance between two teenagers will hopefully open eyes
The film Five Feet Apart was released in the UK today, but even as it reaches audiences it is dividing the cystic fibrosis community.
The film is based on the fictional story of two teenagers with the illness. Because of the huge dangers of cross infection between cystic fibrosis patients, they are supposed to follow medical advice and stay six feet apart at all times. However, love gets in the way and they decide to take back control of their lives, their relationship and “just one foot”.
There are big questions regarding how the first Hollywood film to highlight the illness might impact both those who have the genetic disorder, but also the understanding of cystic fibrosis (CF) among the rest of the population.
As one of more than 10,400 people in the UK born with this degenerative and life-limiting disease, I’m not sure if I even want to see a film that hits so close to home considering that just under two years ago I very nearly died and am only here today thanks to a double lung transplant.
But despite my personal misgivings, it will surely provide a unique insight into lives that most viewers thankfully will never have to experience firsthand and shed light on the problem. And this is good for anyone with CF, or any invisible illness, who will tell you it can be frustrating growing up or living with illnesses that are often misunderstood.
The director, Justin Baldoni, and actors Haley Lu Richardson and Cole Sprouse, received advice from the CF and medical community in the US, including author, activist and CF patient Claire Wineland before she sadly died last year. From all accounts, despite some obvious creative licence (it is Hollywood after all), many of the symptoms are portrayed with alarming accuracy. There has been some criticism that the coughing isn’t frequent enough, and that a portable oxygen compressor would not be enough support for someone in end-stage lung failure, but generally the response from the CF community has been overwhelmingly positive.
Some people with CF, and their families, have been moved to tears by situations they say mirror ones they have experienced. People with CF have a build-up of thick sticky mucus in the lungs, digestive system and other organs, causing a wide range of symptoms affecting the entire body. Life expectancy is still only about 40 years old.
But movies so regularly blur the lines between reality and fiction that there is a danger people won’t appreciate the accuracy, or that they will just focus on the story of two teenagers falling in love, breaking the rules and suffering the grave consequences. Will the film, as many hope, really raise awareness around this incurable disease and inspire people to support research into breakthrough drugs and eventually a cure? Or, for most, will it simply be a film from which they can leave grateful not to be in similar circumstance?
At a time when the CF community in the UK is locked in a battle against the drug company Vertex to gain access to its live-saving drug Orkambi on the NHS, I believe that any increase in public awareness and support has to be positive. So I’d encourage as many people as possible to see it. As a community we need to use Five Feet Apart as a lever to highlight the situation, to point people towards the Cystic Fibrosis Trust and other organisations, in order to educate themselves. I’d also like to request their support – financially and practically – and to raise the awareness of this devastating disease so that one day CF can stand for Cure Found.
• Pippa Kent is 29 and has cystic fibrosis. She runs Now What Can I Eat? on Instagram based on her post-lung transplant journey and the food limitations of immune suppression
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:
For radio coverage visit my You Tube site