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...watch this space!