Me and my broken heart

“Boom, boom, boom, ba-boom... pause (eeeek!)… boom, boom.” If you’re sitting next to me in a quiet office, you might just hear my recently upgraded and sparkly heart making that noise. It can freak people out a little when I explain to them that I hear and feel my heart beating all the time now. Even more so when they learn that my husband and family often hear my heart ticking away too. The noise can make it hard for me to sleep but I’m just totally grateful to be alive and able to call myself the bionic woman!

It’s fair to say that getting to where I am today hasn’t been easy. Many years ago I was one of the many babies born with a heart condition and one of the incredibly lucky ones who has had their life saved time and time again by the most incredible surgeons. I feel like a cat with nine lives! Being born with a heart condition is something you’d never choose, but it shapes who you are as a person and makes you look at life differently. I’ve always been determined to live as normal a life as I can and have been incredibly lucky to have had two gorgeous children along the way.

My happy childhood

Having a poorly heart creeps up on you over the years. I’ve always tried my best to ignore when I’m getting tired, light-headed and breathless and instead tell the world, “I’m fine.” As a child, I felt a need to prove to myself that I could do anything I wanted and would never let my heart stop me. I was often very tired, but I didn’t mind. My Mum even gave me the nickname “flopsie” as I’d often flop down exhausted and fall asleep on the sofa. I kept myself as active as I could, especially with my love of majorettes. I even took part in lots of carnivals, although my face did turn blue at times!

When I was 14, my health started to deteriorate, and I nearly passed out a few times when I was singing in my choir. They decided I needed heart surgery to replace my bicuspid aortic valve. I don’t think I quite understood the magnitude of what was happening, but as you can imagine my parents were incredibly anxious.

My operation was planned for a few days after the famous hurricane of 1987, so we were worried about getting to Royal Brompton Hospital in London, but thankfully we made it. I was the luckiest young lady in the world, my surgeon was pioneering a new procedure that would fix my valve using a less invasive method through my leg (instead of opening up my chest). He hadn’t been successful yet but was hopeful. We decided to give it a go and it worked!!!! I think I was the first person in the country to successfully have that procedure. This meant I didn’t need to repeat a year at school and had plenty of worry-free years ahead of me as I started out in life.

Living life to the full

I was determined to live life to the fullest. I worked hard to get a place at one of the country’s top universities, Durham, and then to start an exciting career at IBM. One of my old colleagues told me they thought I was fearless as I would always try new roles, learn new skills and change things up. I’ve always loved the phrase “feel the fear and do it anyway” – what’s the worst that can happen if you try? It can’t be as bad as heart surgery! Over the years I’ve had loads of amazing experiences, some that I probably shouldn’t have tried with my heart but am so glad I did, such as skydiving, paragliding, abseiling… the list goes on!

I also explored my love for fine art portraiture and had two leaders in the world of photography mentor and train me, which was incredible. I now use these skills to create special magical art pieces for heart children and their families. I’ve loved transporting them into special images of them as superheroes, climbing dinosaurs and being their favorite TV character. I’ve been simply blown away by their stories of courage – heart children and their families are pretty special. It’s hard being a heart patient, but it must be even tougher when it’s your child.

Waiting for surgery

When you hear the dreaded words that you’ll need surgery again, life just halts and all you can do is try to exist. This has happened to me four times now. I last heard those dreaded words again on September 13, 2021. It felt like the rest of the world was emerging from Covid just as my life was starting to fall apart. I spent hours in the hospital room with the doctors that day, they told me my condition was now severe and this time it would be more complex than before, with increased risks due to it being my fourth operation and the resulting scar tissue I had in my heart.

I was also told I would need a much longer surgery as my aortic root and ascending aorta also needed replacing to avoid my heart dissecting, which could be fatal. They kept calling me “complicated” which wasn’t nice to hear. The reality was I could bleed out in surgery or have a stroke. My family and I were all pretty terrified but did our best to get through that time – it was a very hard six months.

I felt immensely guilty about the worry I was putting on my family’s shoulders, especially on my son who was in his final year at school and should have been focusing on his GCSE exams. Instead, he was worrying about losing his Mum. I hated causing him that pain. I tried to be as bright and cheerful as I could, as I think your attitude plays a huge part in your health. A lot of people at work had no idea what was happening until nearer my surgery date. It helped to try and forget things for a while.

Saying goodbye to my husband and beautiful children on the day I left for hospital was one of the hardest experiences I’ve ever faced. And we had to do it twice in March. I spent a day in hospital on my own, nil by mouth, in my gown waiting to be collected for surgery when the first date was cancelled due to a lack of intensive care beds. I think I just about managed to keep everything together in front of my little girl on both of those mornings. I gave her a kiss as she went to school and with a bright smile waved her goodbye before the door shut and I collapsed in an uncontrollable flood of tears. I can still remember the look on my son’s face as I left for the hospital, he understood the reality of the situation much more.

It all went a bit wrong…

I thought I knew what to expect when it came to the surgery and my recovery, but this last experience was completely different. I had a lot of post-op complications and ended up being in hospital for almost a month, alone and away from my family. The hospital was in full Covid lockdown for most of my stay, so I rarely had visits.

I spent a lot of time in high dependency following intensive care, which was a horrible environment but slowly the drains started to come out and I felt as if I was moving forwards. Things then took a turn for the worse… I had hospital acquired pneumonia, kidney failure, a pleural effusion in my lung which required extra drains inserting whilst I was awake. Tachycardia, atrial fibrillation, heart block that they thought would need a pacemaker, and incredibly high infection and inflammation markers. None of the antibiotics they gave me were working so I ended up on the two strongest ones they had – at the same time! It did the trick. I didn’t realize until quite recently that I’ve now permanently lost one of the three branches of electrics in my heart.

I was also isolated twice during my stay. First when I was placed in a ward with someone who had norovirus. And then a second time as I was opposite somebody who had Covid. The tests I had whilst in hospital were a little scary too, especially the one they told me would feel like “impending doom” and needed the defibrillator panels close by, “just in case.”

When I eventually got home and thought it was all over, I had a cancer scare that required some horrible tests. That same week I also had to inject myself every day as my blood thinning medication wasn’t working properly. I’m normally a very positive person but this whole experience completely battered me down.

Looking forward to my brighter future

But with the help and love of friends and family you bounce back up again and here I am. Back at work and returning to a normal life once again. The amazing hospital staff eventually fixed all the things that were going wrong for me, and I keep telling myself how incredibly lucky I am to be alive. I made some wonderful new friendships in hospital that I’m sure I’ll keep for life and I’m now starting to plan for the future.

You’re never truly “fixed” when you have congenital heart diseases but we’re very hopeful that this will be the last heart surgery I ever need to have. Fingers crossed! I’ll never be able to take my heart for granted. Don’t forget to look after yours.