For everyone, growing up is incredibly difficult. From the moment you turn 18, you are catapulted into adult life. This often starts with little changes such as paying tax and national insurance, being able to buy alcohol and being able to vote. But soon the big things such as bills start creeping in and you suddenly yearn for your childhood of less stress and less responsibility. Becoming 18 is a major life change in itself. No matter how mature you are or how reliant you are on other people, being 18 means you are legally recognised as an adult and you are expected to take responsibility for your own adult decisions. You are no longer a child and that’s terrifying.
Now, imagine throwing a major health condition into the mix. You’ve known of your heart condition for your whole childhood but never really been “aware”. Always knowing you’re different because your heart’s a bit funny, but never really fully understanding why. But why would you want to know? You don’t have to make any difficult decision, that’s what parents are there for!
But now they’re not. Of course, they’re still around, but ultimately it’s now up to you. And that’s very daunting.
My name is Katie; I turned 18 in March 2016 and then was moved up to adult cardiac care in September 2016. Up until September, I felt I had the whole adult thing pretty much worked out. I had a full time job and great friends. I guess you could say I was oblivious to what my future held.
When I was about 18 months old I was diagnosed with Pulmonary Atresia with a Ventricular Septal Defect. This required immediate open heart surgery which thankfully all went to plan. Fast forward to my 18-year-old self and I was quite a normal, healthy person. Of course, it wasn’t all plain sailing with a few complications along the way which included a second open heart surgery at the age of 13. But I was fine! Living my life with minimal medical intervention, on no regular medication and with no more surgeries planned, it was near enough a medical miracle!
At my local hospital, they have a transition clinic for when you are no longer suitable for paediatric cardiac care and have to join the masses of adults living with cardiac problems. I went along to the clinic appointment where I was introduced to my new consultant and team of nurses who would be helping me manage my condition and also would be ultimately looking after me. This was led by my paediatric consultant who did a verbal handover in front of me and my mum, discussing my history and also things that may need to be done in the future. I always used to joke that this was to reassure my new consultant that I wasn’t dodgy before handing me over, kind of like buying a new car. So all the formalities were out of the way and now it was time to say goodbye to my paediatric consultant.
I suppose you can say that’s when the metaphorical emotional brick hit me square in the chest.
Leaving my childhood consultant felt like the final nail in the coffin for my childhood. I still say that leaving him was one of the hardest things I have ever done in my whole life. The man who had been a stable fixture in my life for the past 15 odd years had just been taken away from me. The only doctor I have ever fully trusted, who has been a massive part of my family and who has guided me throughout all my treatment. And I’ll probably never see him again.
In the immediate aftermath of leaving the transition clinic, for lack of better phrasing, I was a mess. I suppose in a way I was grieving for the loss of my childhood and also the loss of the most trusted person in my life. The rational part of my mind reminded me that I was still in very capable hands with my new team, but that didn’t make my loss any easier.
Months on from transitioning up to adult care, talking about leaving paediatrics hasn’t gotten any easier. I still find myself tearing up a bit if I think about it. I’m starting to see the benefits of my new team. For example, if I have any worries about anything regarding my condition, I can call them or email them. They can then pass this on to my cardiologist who will decide if anything is actionable before my next clinic appointment. It’s nice not having to go through my GP anymore to get in touch with my consultant. They are literally just on the other end of the phone. There will also be no more costly trips to London for routine tests as most of these can be done at my local hospital now.
In conclusion, transition to adult care is scary. After all, it’s a world ahead of you full of responsibility, new people and the dreaded unknown. But, let’s be honest, it has to happen. Thank goodness for the Somerville Foundation Facebook page, it’s really helped having other people to talk to about my condition and they’ve been a massive support. I feel we can find comfort in each other to navigate this scary world together with our life altering conditions.