30/03/2018 08:50 BST | Updated 30/03/2018 08:50 BST

Now What Can I Eat? A Post-Lung Transplant Journey

I remember vividly being informed that I would no longer be able to look forward to a rare steak as my post hospital treat

On Good Friday 2017 my life changed forever when I received a double lung transplant. Without this operation I was unlikely to survive another chest infection due to my Cystic Fibrosis and in the months leading up to that point I had spent most of my time in hospital and all of it attached to an oxygen cylinder.

I am incredibly lucky; the operation meant my life didn’t end at 27 and I will be forever grateful to my donor and his family for allowing me a second chance at life - but with the operation came a number of significant changes.

I was still in intensive care when I was first visited by the dietician team. The food changes I would have to make post-transplant had probably been mentioned in the initial talks before I was listed for the operation but it’s not something I remember. Hooked up to what seemed like hundreds of wires and machines and with ‘normal’ food for once not at the forefront of my mind, I remember vividly being informed that I would no longer be able to look forward to a rare steak as my post hospital treat. And that wasn’t the only adjustment I would need to make, there was a whole double page sheet of foods that were now off the menu for me and a whole new list of considerations when eating, whether at home or (it seemed a long way off) when eating out.

Thirteen days post-surgery and I was going home. It was exciting but also nerve wracking. While I was in hospital I had round the clock and expert care, suddenly all of the things that they had been doing to make my recovery as easy and stress free as possible were my responsibility. Although I had my family around me who were an amazing support, this situation was a new one for all of us and a massive change – around 50 new medicines to take at six different times during the day, the new monitoring of weight, sugar level and temperature to check for any signs of issue with my transplant and the big one for me…the need to watch what I ate and how I prepared food.

Pre-transplant I was definitely not this person. I would eat food that might have been in the fridge a little too long, would happily tuck into street food and unknown ingredients without worrying about how they were prepared or any possible food hygiene issues. I loved trying new things and, on some occasions, tucking into dishes that I probably couldn’t have told you the majority of the ingredients.

While it’s true that some people choose not to follow the instructions set and advised by the dieticians, or pick and choose to what extent they will, I decided that I was going to be strict about it. If anything could reduce my risks of getting ill again I was going to embrace it. Even if it did mean giving up some of the foods I used to love.

So, I headed to the internet. I wanted to find some inspiration and some reassurance from real people who had gone through the same situation. I found nothing, decided I might be able to do something about it and so Now What Can I Eat? was born.

My idea was to cram a book full of recipes that those who were immune suppressed could cook from and not worry about. A book that friends and family of those who were immune suppressed could reach for to prepare meals for their loved one without any concern. Using only list approved ingredients but also with the added preparation steps necessary integrated within the normal method. I wanted to be able to cook normally from a recipe book and forget all the other issues going on, and I imagined other people might want the same.

Thankfully, after reaching out through email, Instagram and contacts I had from my previous career, almost 100 chefs, restaurants and well-known foodies agreed it was a good idea and offered to donate a recipe if I could make the book happen.

And that is where we are at now, trying to raise the funds to get the printing press rolling and the book out and available. I found a publisher who was able to offer support and logistics to but I we still need the money to make it happen. To try and do this I have launched a Kickstarter campaign and am keeping everything crossed that with the support of the public this book can become a reality and help some of those thousands of people who are constrained by this diet and still want to enjoy and explore food.

For more information about Now What Can I Eats’ Kickstarter campaign please visit www.kickstarter.com/profile/nowwhatcanieat or www.nowwhatcanieat.blog. You can also find me on Instagram and Twitter @nowwhatcanieat