Kirsty is 33 years old with half a working heart, in July she will celebrate 24 years since having her Fontan operation. Kirsty currently works as a children’s nurse in intensive care at the Royal Stoke and also runs a wonderful side business doing aesthetics and skincare. Nothing short of inspiring for us all, but particularly special for those at the start of their half-a-heart journey.

In the month of July 2022, Kirsty will be taking on a 240-mile walking challenge to raise money for Little Hearts Matter and Birmingham Children’s Hospital where she was treated. As part of this incredible fundraiser, Kirsty has very kindly shared her story to raise awareness for life as an adult Fontan patient.

My story…

This July I am going to be walking a total of 240 miles throughout the month. That’s an average of 7 miles a day, every day in July.

This July the day before my 34th birthday it is 24 years since my Fontan surgery was completed and gave me the life I have today. Without the doctors, nurses, the research and funding I wouldn’t be here today. I am incredibly grateful to my team of doctors and nurses for all they have done and continue to do for me, so I really want to give something back by raising some money to donate to them. This will help them to continue the incredible work they do. While I am at it, I want to raise some much needed awareness about what a single ventricle heart is, and what it can be like living with such a condition.

I was born with a rare and complex congenital heart condition, one of the most complex heart conditions there is. The heart I was born with was not compatible with life and so I needed major open heart surgery so that I could survive. I was not diagnosed until I was two years old which is a miracle in itself. I was rushed to Birmingham Children’s Hospital and the doctors could not believe I had survived for so long with no intervention. The surgery was done in two stages, aged 2 and 9.

I have now what is called a single ventricle heart and a Fontan circulation. Essentially only half of my heart works. The oxygenated blood is pumped out of my left ventricle around my body but then instead of returning to the heart, and the right ventricle pumping the de-oxygenated blood to the lungs, the blood flows straight to the lungs where it is oxygenated and then back to the left side of the heart to start again. The left ventricle is continuously doing double the work.

The Fontan has, and continues to given so many patients like me, time and hope.  

I am incredibly lucky to be sat here now, writing this, sharing my story at 33 years of age. Research shows that single ventricle hearts will not work well after 30-40 years, patients then decline and go into heart failure.

The Fontan is a palliative treatment, meaning that for those of us with single ventricle hearts there is no other treatment once the Fontan does begin to fail!  The only thing we know for certain is it will fail, we just don’t know when.  Life expectancy for us therefore is not great. A heart transplant could be an option, however in my case I was told this might not even be an option because of how different my heart works.

 Living with this, as you can imagine is a battle in itself.  36% of people with congenital heart disease also suffer with mental health issues and I believe with more awareness and understanding of the condition, this could help people struggling get the help they need, and be able to talk to more people who understand why they feel the way they do.

Living with such a condition can sometimes feel isolating. My consultant once said to me, “the hardest part for you is, it’s like you are living with an invisible disease.  It’s there, you have to deal with it mentally and physically, but you look perfectly healthy on the outside and so people just don’t get it.”

This could not ring more true the older I get, people just don’t get it. That’s ok! But with more awareness about single ventricle hearts this could help people understand and pave the way for a better, easier way of living with such conditions. With more awareness, may come more funding and research into more treatment so that children of the future can grow into adulthood, and continue growing into a bright and longer future!

It has been a long and hard road for me mentally the last few years, for me to get my head around the reality of my condition.  However! I refuse to give in to the fear of not living a long life. As I wander through my 30’s I am increasingly aware of time, but I will keep going and doing what I do until I simply can’t any more, and my fight is to prove statistics wrong, and be one of the first of hopefully many to live longer!

What I have learnt on this journey is to be positive because that is what has got me this far.  How lucky am I to still be here and so healthy!  I have been to university despite missing so much of school as a child.  I am now myself a nurse working in intensive care giving back and trying to be the nurse that I have always admired and looked up to as a child.  I have a beautiful family, my own little girl, who I never ever thought I would have because of the many risks involved for me and my half a heart! I am so lucky to have carried and given birth to her, and my heart still be the same as it were before pregnancy.  There’s so many others in my position still with the heartache of not being able to have their own child!

Most importantly I am fit and well and enjoy every part of life, and for as long as I have that, I have hope!  Hope that there will be more treatments by the time I need it, hope that I will be here to see my baby girl grow into a young woman and she won’t need to just have a memory book, reading about our past adventures….but we can live more together!  Just because the doctors don’t know how long we will live, does not mean we cannot prove statistics wrong and live longer than 30-40 years with single ventricle hearts!

As the Little Hearts Matter charity say, ‘we have half a heart, not half a life’. Please help me raise some much needed money for charity and for more research into further treatment! If you cannot donate, then all I ask is you read my story! LHM does amazing work to help young people and their families and also adults still living like me. This is an ever-growing condition so we need a voice, we need more treatment and we need hope! Here is a link to my fundraiser: Crowdfunding to donate half to the Little Hearts Matter charity and half to the adult congenital heart disease team in Birmingham. on JustGiving

If sharing my story helps just one family, or gives one family some hope for their child.  Then I will have done exactly what I set out to do today! Thank you and wish me luck 🍀 🥰