On Good Friday 2017, I had a double lung transplant.
I’m 28 and have had cystic fibrosis (CF) my whole life. It’s a condition that causes sticky mucus to build up in the lungs and digestive system. I was born with it, but was diagnosed at two years old.
As a child I was really lucky – although I had hospital check ups every three months and took a concoction of medicines, I lived a pretty normal childhood.
My parents made sure I took part in sport and kept my lungs as healthy as possible, and while I was obviously aware I had CF it meant fairly little for much of my childhood. In fact, the bi-yearly hospital trips to London were great as it meant a day spent just me and a parent, with pizza as a treat at the end.
I did GCSEs and A-levels without having to worry about my health too much, but as is with the nature of CF it started to become a bit more evident, and I started getting more chest infections and coughs etc. I think I’ve always been determined not to let it get in my way though, and I took a gap year after school, spending part of it doing a ski season in Val D I’sere. Although challenging with CF, I did manage four months and I had a great time.
I had my first hospital admission for IV antibiotic treatment later that year after five weeks traveling South East Asia. The IV treatment is used to treat respiratory infections. At the time, and for a few years after, I was relatively well still, and IVs were just a way of keeping on top of this.
I’m stubborn so I tried not to let CF stop me doing things and IVs were often timed to allow me to go on planned holidays and keep doing the things I loved, but it did become more and more of an issue as time went on.
I went to uni which – although interrupted by a few spells away for a weeks worth of IV antibiotics, and the daily meds and nebulisers I was very used to – was largely similar to everyone else’s experience. I then moved to London after a second ski season and lived and worked (mostly doing food and drink PR) much like everyone else until about 2016.
In 2016, after a series of infections, courses of IV antibiotics, a falling lung function and with the acceptance that the antibiotics were no longer helping in the way they used to, the option of lung transplantation started to be discussed.
It’s a long process and people can wait years for a transplant so we were keen to get the ball rolling sooner rather than later. Despite suggestions it might be too early, I had my pre-transplant assessment at Papworth hospital early in 2016. After a year – much of which was spent in and out of hospital or having home IVs – I decided, with the support of my doctors, to activate my transplant listing in November 2016.
You have to carry round a separate phone with you, which they can call at any moment, but months down the line, I hadn’t had any calls. In February 2017, I was admitted to hospital seriously ill and I ended up being temporarily suspended from the list, as I would have been too ill to survive the surgery. Thankfully I recovered enough to be re-listed five days before I ended up having my transplant.
When I got the call saying they had some organs that were a potential match I didn’t really have time to be nervous. You often also get false calls when it turns out the organs aren’t viable, or they can’t go ahead with the transplant so in the back of my mind I assumed that would be the case this time. It is a huge surgery – I was put on a bypass machine and in surgery all night – it all happened so fast after we found out it would definitely go ahead, I just didn’t have time to worry.
To be honest, I’m pretty sure it was much more worrying for my family, boyfriend and friends. I was out cold until they knew it was okay and woke me up in recovery, and then was obviously a bit out of it, whereas everyone else had to go through it minute by minute.
The transplant has affected my life in an amazing way. Without my transplant I wouldn’t be here now, but it’s not been a completely challenge-free ride. I had a partially collapsed lung and post-transplant lymphoma which slowed my recovery and meant a delay in getting back to ‘normal’ which was what I was so desperate for.
Now I am back in London living in a flat with my boyfriend, we have a puppy, and I am starting to explore going back to work. I have to be much more careful in an attempt not to get ill, so avoid public transport etc, and I haven’t been allowed out of the country yet, although this is allowed from my first lung-iversary on 14 April – I’m excited to go on holiday and get some sun on my face!
However, one of the biggest changes to my life was finding out that I can no longer eat a number of things. I have to take immunosuppressant drugs for the rest of my life, which weaken my immune system, to make my body less likely to reject my new lungs.
This means my whole diet has changed – there are quite a few foods which are now ruled out for me. I can no longer eat rare meat, soft or mould-ripened cheese or eggs that aren’t cooked into something. I also can’t eat fermented ingredients or pre-cooked meat from deli counters, and I have to ensure all products are washed properly, even if they’re about to be cooked.
One of the first things I remember post-surgery was someone telling me I wasn’t going to be able to eat rare steak ever again…the horror!
I’d always been a complete foodie; I loved trying new recipes and ingredients, spending most of my wage on eating out and most importantly in this case with an ever growing cook book collection which I spent my life browsing and recreating from.
I was pretty relaxed about food before, and now it’s something I really have to think about. I looked online for support and found nothing, and decided I wanted to do something about it.
It’s not just people who’ve undergone transplants who are immune suppressed – it includes people undergoing some types of cancer treatment, those with Crohn’s, rheumatoid arthritis etc, so there are 1000s of people out there who may be confused about what they can and can’t eat.
I started the Now What Can I Eat? Instagram to share my food journey and help others try and understand what they can eat, and that they can still eat good food. I’m getting better at living within the limitations and being confident enough to work around them.
It does take time to get used to it, but something like Now What Can I Eat? would have been really helpful for me at the start – not just for me, but for my friends and family. This is why I’m now turning it into a recipe book.
The Now What Can I Eat? cookbook will contain over 100 recipes from different chefs like Gizzi Erskine, Paul Ainsworth and Tommy Banks, as well as restaurants like Leon, Burger & Lobster, and Honey and Co.
Well-known foodies like Tess Ward, Alice Living and Lili Vanill have also contributed, and all recipes are 100% immune suppression friendly. The recipes don’t just contain the right ingredients, but the method has all the necessary cooking steps to ensure anyone can prepare safe and delicious food.
The idea is to simplify things, not only for those who are dealing with illness, but their friends and family, who have enough to worry about without having to think about food.
It’s a really beautiful book and the added bonus is that I’ll be giving some of the profits to charity. These will initially be Papworth Hospital Charity (where I had my transplant) and The Brompton Hospital Charity (who kept me alive long enough to make a transplant possible).
I have a publisher but now I need to crowdfund £50,000 as making a book – especially one that needs a dietician to check each and every detail – is expensive.
I decided to launch the campaign today, as Good Friday marks the day I went into hospital to have my transplant. The campaign will end on 20 May – my 29th birthday.
It’s now been a year since my transplant and I’ve had some ups and downs but on the whole, it’s been hugely positive.
I am so grateful to my donor and his family every single day. While it is obviously incredibly sad that someone else lost their lives, I think it’s so amazing that even when you die you can do so much good by donating your organs to someone else.
By my donor’s family allowing that to happen, I and possibly up to 8 other people’s lives were saved.
I’m excited about my future and how I might be able to help other people in the same or similar situations, with this book.
Back Pippa’s campaign over on Kickstarter. Rewards range from receiving discounted copies of the book, to attending a supper club, eating dishes cooked by contributors
You can also follow Now What Can I Eat? on Instagram and Twitter.
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