Who am I?
Hi! I’m Pippa. I was born in 1989 with Cystic Fibrosis. Diagnosed at the age of two I was lucky enough to stay remarkably well throughout my childhood. Although interspersed with trips to hospitals in both London and Cambridge the reality most of the time was that with medication my life was barely different to anyone else’s. I completed school, a gap year, a ski season, a degree in History at Reading University and a second ski season with little regard to my condition but sadly, as is the nature of Cystic Fibrosis, gradually my condition began to decline and my symptoms became more evident. At first this simply meant regular courses of IV antibiotics, often at home so I could continue working in my PR job which I loved, but gradually, and most obviously over the last 18 months before my transplant, it meant extended hospital stays, what seemed like hundreds of different medicines and in some cases a need for additional oxygen. In November 2016 my doctors and I finally decided it was time to go on the Transplant List. A scary but necessary step as my own lungs were obviously getting worse and the reality is you can often wait more than two years for a suitable donor. Once on the list, and with no idea about when I might get that call, I returned to work with my fingers crossed and a ‘bat phone’ constantly in my hand. Soon ill again with an acute infection, I was admitted to hospital in an attempt to make me well enough for the transplant to still be a viable option, at this point if I couldn’t have the transplant, we were running out of ways to go.
Post transplant it was remarkable how quickly I felt well again. From being unable to walk or talk without oxygen, only half an hour post waking up from surgery I was sat up in a chair and eating jelly, three days later I was walking around the ward and just 14 days after my transplant I was off home with a new pair of lungs safely installed; a gift I will be forever in debt to my donor and their family for. The day I was discharged While the alternatives are obviously unthinkable, there are still challenges after such major surgery. As a complete foodie all my life, the one that immediately stood out to me was the food limitations that would now be imposed on me. Taking a concoction of immune suppressants meant that there was suddenly a whole list of foods that were off limits and an additional list of considerations when it came to food purchase and preperation. Suddenly, eating was something that had to be thought about in a different way and calculated in terms of risk rather than just something I could enjoy. With hundreds of cookbooks at home, I was faced with the reality that I could no longer simply open one and cook from it and I decided I wanted to do something about it. I have always been a foodie and proof of this is that after my operation I was unable to speak but the first thing I wrote on a piece of paper for my mum said, ‘I want some lunch’. Priorities.
What I’m doing
Post transplant I soon realised that although hospital dieticians were able to provide the ‘cans and cant’s’ I wanted more than this. I wanted to be able to enjoy food like I always had, without having to factor in concern or edit recipes to fit my new dietary limitations. I headed to the internet expecting to find a solution, but I found nothing for those on immune suppressants, which shocked me considering how many people are reliant on these medications every day.
I have set up the Instagram account @nowwhatcanieat in the hope that I can begin to build a community of people who are either in the same or similar situation as me or effected by it in some way whether that was because they work in the field or because they had friends or family who are affected. I’m also working on some other projects...
Now What Can I Eat - The Book
www.kickstarter.com/projects/nowwhatcanieat/now-what-can-i-eat-the-book
A book crammed full of recipes, from loads of different chefs, restaurants and well known foodies, that are 100% immune suppression friendly. With not only the right ingredients but with all necessary cooking steps included in the method to ensure anyone can prepare safe and delicious food. The idea being that those who are dealing with illness, their friends and family have enough to worry about without having to think about food too. And for those who aren't limited by diet, a beautiful recipe book crammed with recipes donated by some of the UK's favourite chefs with the added benefit that by buying 'Now What Can I Eat' and supporting the campaign you are helping others too! I hope the below answers any questions you may have but please just get in touch if you have any queries!
Q. Why?
A. As a complete foodie all my life post transplant one of the things that immediately stood out to me was the food limitations that would now be imposed on me. Taking a concoction of immune suppressant medication meant that there was suddenly a whole list of foods that were off limits, things such as rare meat, blue cheeses, soft boiled eggs to name a few and an additional list of considerations when it came to food purchase and preparation. Suddenly, eating was something that had to be thought about in a different way and calculated in terms of risk rather than just something I could enjoy. With hundreds of cookbooks at home, I was faced with the reality that I could no longer simply open one and cook from it and I decided I wanted to do something about it.
Q. Is it just those who have had transplants that follow these rules?
A. No! I soon realised that in fact the diet that I was now restricted to was not simply for those who had received transplants. There are thousands of people in the UK alone who are dealing with taking immune suppressants every day and so are restricted by the same dietary rules. This includes anyone who has had an organ transplant, many people undergoing chemotherapy, those who have crohn's disease, rheumatoid arthritis or other autoimmune diseases as well as other conditions.
Q. When will we actually have the book?
A. With the timings we have planned at the moment the book will be available for everyone by December 2018 - the perfect Christmas gift! If you support us in the crowd funding though you will get your hands on a copy before anyone else.
Q. What will the book look like?
A. I want the book to look like a completely 'normal' cookbook - filled with beautiful images and recipes donated by some of the UK's favourite chefs. It will include recipes for breakfasts, quick lunches, dinners in front of the TV, meals for special occasions and everything in between. There will be some specific and expert medical advice at the forward of the book but I intend for other requirements and changes to recipes to be almost unnoticeable. This way cooking from the book will be a carefree experience and not a constant reminder of limitations and illness.
Q. Why do you need so much money?
A. Creating a book is expensive, and creating a cookbook is more expensive than most. You need to pay for the design, the proofing, the printing as well as the photography. With this book we also need to spend some money to employ a dietician to check each and every recipe is completely okay for the immune suppressed. We want the book to compete with the 'normal' cookbooks that you buy - full of delicious images and we definitely don't want it to look like a booklet or medical text which lectures about diet rather than inspires you to get into the kitchen. The aim is that with the money raise we will create a book which can sit amongst other 'normal' cookbooks, look just as great and become a staple resource within your kitchen - whether you're cooking for someone who is immune suppressed or not. In addition, from the funds raised we will be able to donate a contribution to some very important charities to me - initially Papworth Hospital Charity, where I had my transplant and The Brompton Hospital Charity, the hospital that kept me alive long enough that a transplant was possible. The more we raise the more we will be able to donate but at a minimum its a significant amount.
Q. Whats next?
A. Well you've made it this far which is great (thanks) So right now I've got the idea, I've got the support of the chefs, dieticians and a publisher so now all I need to do to make the idea a reality is raise the funds to get the printing press rolling… And that's where you come in… I would be hugely grateful if after reading the above you might consider donating to support my project - the sum may seem large, if were going to do this I want to do it properly and create something great, but I hope with the support of as many people as possible it is achievable. As you will see you can pledge varying amounts and I really do appreciate anything you might be able to donate. Every little really does help and I would love to be able to make this dream a reality and have a positive and lasting legacy from my journey over the last few years.
Comments