Holly’s Story

Holly’s Story

Hi my name is Holly and I am 16 years old. I have a congenital single ventricle heart condition. This means I only have half a working heart. I have fortunately had the chance to have the 3 open heart surgeries: PA banding, Glenn Shunt and Fontan operations when I was young. I knew that in the future I would need a transplant as this wouldn’t be a full cure for the heart. Unfortunately due to an underlying liver condition it caused my heart to be under too much pressure than others with the Fontan. This has led me to need a heart and liver transplant. I was lucky enough to be able to get a place on the transplant list in Newcastle Freeman’s Hospital which is the only hospital at this moment in time that will do the dual transplant.

My heart condition was diagnosed at birth. My early childhood was amazing to say the least, I didn’t really understand what a heart condition was. I never realised that I was different to others. In the playground in winter, my lips used to go blue and I would be told by teachers to take a friend inside and everyone would ask to be the friend so they could get out of the cold. On days out I would get tired so easily, but I used to love to getting to go on my dad’s shoulders and feeling like I was on top of the world. I never really minded being in hospital at a young age.

As I turned older and I started to realise that my heart condition was limiting me more and more. As I entered high school I started to care about other people and their opinions. I would become tired and breathless so easily in PE class and I would always be in bottom set. I got so embarrassed that I couldn’t even run for more than 5 minutes without starting to feel light headed. My teachers at my school never really bothered about bottom set and would just care about the kids in the top set. It was frustrating as I did really like to do sports I just couldn’t as I didn’t have the energy. I never told anyone about my condition, I didn’t want to be treated differently. I didn’t really have many friends at school and I didn’t like school, I was more interested in doing teenagers things: playing computer games or going out with friends.

May 2019, I was near the end of yr10. It all started to go wrong. I was admitted to hospital for stomach pains in my tummy. I was later released but then after two weeks I was admitted back into hospital. From then it feels like a dream gone wrong, I can’t remember exactly what happened. I just know it all went wrong and I was very ill, I was in bad place. I remember people coming to ask me about what I would want to happen if I was to not make it. It was horrible, nothing a teenager should have to even think about.

I suffered massively mentally after leaving hospital. I hadn’t been able to keep contact with many of my friends from school and I was nervous to tell them about my condition. I told a few close friends who seemed to care and give me sympathy messages. However, many of my friends moved onto college and I am unable to attend college with them with upsets me.

Luckily, I had a set of amazing doctors and nurses who looked after me and by September 2019, I was out of the hospital and stable. I had to have often hospital appointments and community nurses come to check on me. I was fat restricted to 9g of fat a day and I was on a fluid restriction of 1L a day with 500ml of it being a protein milk substitute. Because of the restrictions, I had to home make all my meals so I was sure I didn’t exceed the fat content. I am now really into cooking and I make all my meals from scratch including my families’ dinners and lunches. As I became more stable overtime, I was able to get to the point I am now which is 1L of fluid a day, and no fat restrictions.

Now I have found the wonderful LHM website and it has helped me to understand my condition and show there’s other people like me. I am so happy to been able to share my experience with other families and despite there not currently a cure to congenial heart diseases that everyday should be lived to the fullest. Now, writing this in 2023, I am currently being online-schooled and able to retake yr10 and yr11 and am being predicated high grades. I have also been able to start driving lessons. I am now just waiting for my turn and I can’t wait to finally be able to have a full amount of energy.