In 2012, Sophie received a double lung transplant at Harefield Hospital. To mark her ten-year anniversary, she shares her experience with us in this blog.

My earliest memories of having cystic fibrosis date back to nursery. It was a specialised nursery for children with complex needs, and I was lucky enough to go on to a school with fantastic facilities for those with complex needs after that. It was great to go there because other pupils would grow up with children with complex difficulties and see it as a norm. I never felt different. Thankfully, I wasn’t too poorly as a child. With medication and physiotherapy, I was able to do what everyone else was doing.

Once I hit puberty, this changed. At 12 years old, I had a growth spurt and got skinny, really skinny. When you have CF it’s harder for your body to digest food, fat in particular. Our CF team tells us from an early age that a healthy weight means a better chance of fighting off life threatening infections.

Over the years, my lungs started to deteriorate without the support of a healthier body. Infections became more frequent, and all my energy was spent fighting them off. I had a gastrostomy, which is a tube fitted in your stomach through which you can be fed. I was taking in 800 calories a night to try and build me up.

My attendance at school had reduced to about 20% because I was often at Kings College Hospital getting treated for increasingly severe infections. I was proud to have completed my GCSEs despite all of that.

At the age of 16, I had to drop out of education. I was starting to use a wheelchair and needed oxygen more and more. Going to college with all of that would have been a mission. I was so ill at that point I don’t think I could have taken in the work anyway. I was dependent on my family to do everything for me.

When my lung function was at 15% and my health was at its worst, I remember the teams at Kings College Hospital fighting so hard for me. Seeing their faces when they thought I’d lost the fight was awful. They were like family to me, and I felt like I’d let them down.

My only option was to go on the transplant list. I was only 17 and quite naïve about what treatment meant for me. The lengthy process of testing and meeting with the transplant teams was incredibly scary. Hearing all the details about my health and about transplants was sobering.

Once I was on the list, I got a false call every month. I just kept telling myself “I’m one step closer” and then after four months, transplant day finally came on the February 29. I was so ill at this point I wasn’t even scared. I said a difficult goodbye to my family, told the team in the theatre “thank you” and was put to sleep.

The question I get asked the most post-transplant is: “Was your first breath with your new lungs amazing?” I can tell you it most definitely wasn’t! It was like breathing fire despite the pain management. What was amazing, however, was seeing the tiny blue stitches through the bronchoscopy which held my new lungs in place.

I had bad periods of anxiety and panic attacks following my transplant. I had been reliant on oxygen for so long that when they started to ween me off it, my heart would start racing. My oxygen “comfort blanket” was being taken away and this was so difficult both physically and mentally.

I remember a nurse at Harefield sat with me all night. She held me and stroked my hair while I cried. She really made me feel like everything was going to be ok. I’ll never forget that.

Recovery was tough. I couldn’t walk before my transplant and my muscles had grown weak, but four days post-transplant the physios had me up and on an exercise bike. It was brutal, but what I had never been used to before was getting a little bit stronger every day. Feeling this slow progression got me through it. I see myself as a fighter, and a lot of people with cystic fibrosis are the same. We work hard to stay here, and I bring that attitude with me whatever I’m doing, it’s who I am. Four weeks later I was discharged.

All I know about my donor is that she was 29 years’ old. I wrote to her family a year after my transplant and plan to write to them again for this 10-year anniversary. They have chosen not to write back, but I’m glad they have accepted my letters. It has given me a chance to thank them and let them know what I’ve been able to do with my life thanks to their decision. I hope that these letters have given them a unique sense of comfort in return.

I was recently asked what my secret was in getting to my ten-year anniversary. It really is just luck. Along with all the anniversary stories, there are just as many heart-breaking stories.

I’m far from irresponsible with my health, but I was not given new lungs to wrap myself in cotton wool for the rest of my life. I wanted to live my life.

I’m aware of the significance of this anniversary. On our celebratory weekend I’ll have a lot of feelings. I will focus on the positive ones, but it’s important for others to know that it’s normal to feel a little scared too.

Ten years is a huge milestone, so as a result, I wanted to do something monumental for the occasion. My ‘Decade Decathlon’ is ten fundraising events that I’ve been holding throughout the year, and I’ve raised £3,828 so far! At the moment I’m doing 10k a day on my bike, well almost every day, and I’m really enjoying that. I’ve also held bake sales, raffles and my friends are holding their own challenges to support me.

What I’ve learnt over the past ten years is that you must live this new life for yourself without the pressure of expectation of what you should be doing with it. I count myself extremely lucky, as so many people I know do not get to have my chance of new life.

For the price of a morning coffee, you can help Sophie get closer to her target and support Harefield as they work to give more patients like Sophie a second chance at life.

Donate to Sophie’s Decade Decathlon