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Open Heart Surgery at 23 years old

by Helen Doyle

I have always considered myself incredibly lucky, having led a very normal and happy life, until just after my 21st birthday when, one day, I suddenly collapsed while I was at work. I had a moment of feeling dizzy and heavy chested and within a few seconds everything went black. I woke up on the floor confused, breathless and drenched in sweat. An ambulance was called and they did three ECGs before they drove me off to hospital. They told me I had low blood pressure and a murmur which was the first time in my entire life I was told there might be something wrong with my heart. On paper, I was a fit, healthy, active young person so I was in denial that there could be something wrong with me.

Over the next few months I continued to regularly collapse until I ended up being referred to the Professor Gatzoulis Cardiology Clinic at the Royal Brompton Hospital in October 2012. After several ECGs, X-rays and ECHO scans, I was diagnosed with Atrial Septal Defect. This meant I was born with a hole in my heart between the two upper chambers which had gone undetected my entire life until now. I was told that as the hole was relatively small and I was otherwise in good shape, I should continue to live my life as I had been, keeping fit by running regularly, eating healthily and staying active. When the time came, I should be fine to have children and there was (at the time) no evidence to suggest that my condition would be passed onto them. I took this as pretty good news and counted myself very lucky.

If I’m honest, after a while I started to forget I had anything wrong with me. I didn’t want to be defined by my condition or for people to feel sorry for me, so I didn’t tell many people about it and I carried on as normal. I took up running again and began training quite hard over the next few years, but what I didn’t realize was that alongside this, all my symptoms were becoming significantly worse. As most people who have been diagnosed with a congenital condition later in life will know, you tend to overlook things that, in hindsight, are major red flags because you have always thought they were normal. My palpitations got worse, chest pains became more frequent, I had debilitating daily migraines which left me almost completely blind, and I started to get so exhausted I found it hard to function on a day to day basis. 

October 2014 was when everything changed. I had a Cardiac Magnetic Resonance scan and the results showed that the right side of my heart was swelling and straining and was having to work incredibly hard to due to the amount of blood passing through the hole between the two upper chambers. My doctor said they had to interfere and I needed open heart surgery to close the hole.

I remember the room seeming to fall away around the doctor’s face as she told me it was an ‘investment in my future’ and I needed it done now to prevent anything bad from happening. Exactly a week before this I had got a ballot place in the 2015 London marathon, a bucket list dream of mine, and now I was being told I should withdraw because I ‘probably wouldn’t make it’ if I were to attempt it. She also said I needed to have it fixed before I have children as my heart wouldn’t be able to cope with the strain of pregnancy. As I left the hospital I was completely inconsolable. I was so terrified I couldn’t even bring myself to tell my parents until later that evening. I had never expected to receive news like this, especially not at 23 years old. 

At first I found it really difficult to cope and felt completely lost, but I also had an overwhelming feeling of gratitude that I was in a position where I was going to be fixed so I could have a future to look forward to. Though I felt confident that my fate was now in their hands, I felt numb. I lost my appetite, stopped running for fear of something bad happening and I couldn’t concentrate at work anymore. I was, however, surrounded by really supportive friends and family who helped me come to terms with everything and helped me stay positive.

I checked into the Royal Brompton’s Paul Wood ward on the 28th January and was wheeled down to theatre at about 1pm the following day. The last thing I remember is telling my Mum I loved her while they injected anaesthetic into my arm. I was in theatre for about six hours and the operation went really well. Two holes and a leaky AV valve were repaired. I started to come around at 5am the next day to a nurse telling me to try to breathe on my own as I still had a breathing tube down my throat. The first four days in intensive care and high dependency were really tough, I reacted quite badly to the morphine and was in a lot of pain. 

My nurses were all absolutely fantastic and understanding about the trauma of going through such a major operation. I never expected to have to learn how to breathe, walk and talk again and it was a huge shock being stripped of my independence overnight. That being said, things got much, much better after I had my three chest drains taken out and my pacing wires and neck tubes removed. This meant I could start doing things like eating, getting out of bed and going to the toilet by myself. I left hospital after eight days and spent the next three months recovering back at home in Somerset.

Recovery was made easy by my wonderful parents being so incredibly supportive and just keeping my spirits up every second of the day, even though I know it must have been tough on them too. I’ve always been close to them but it brought us even closer together. My friends were also wonderful and never let me feel like I was facing anything alone but I did find it hard to adjust. I couldn’t sit up in bed or get dressed by myself anymore and I needed help with absolutely everything. I gradually started to build my strength back up, increasing my daily walks even if it was just a few feet at a time, but even the tiniest amount of exertion left me exhausted. I kept thinking about the London marathon and how amazing it would feel to get back out there and start running again. I even had dreams where I was being cheered on as I crossed the finish line, only to wake up and need help to walk three feet to the bathroom! Sure enough, at eight weeks post-op I went for my first run which felt like a huge achievement even though I could only run for about five seconds at a time.

At first I was terrified about the scars from having open heart surgery and I was worried that I wouldn’t look the same or that I would have to cover them up for the rest of my life but it is in fact the total opposite. I’m so proud of them! Without these scars I wouldn’t be here, they are the reason I am still alive and they serve as a daily reminder of everything I’ve overcome these last few years (and my entire life, without even realizing).

I continued to recover well, although I had a couple of stop-starts where I tried to get back to normal too quickly before my body was ready. I had a scare in May when I started having huge nonstop thumping palpitations which lasted for several weeks and landed me back in hospital. I didn't realize how much this had knocked my confidence until the palpitations stopped and I got the all-clear in July, which was one of the happiest days of my life! I started a local cardiac rehabilitation programme in September 2015 as I was still struggling with getting my strength and stamina back. Even after just the first session I felt a million times more confident. I finally started working full time again in November 2015, and although I still feel that I have a way to go, I feel great and I’m really happy with all the progress I’ve made this year.   

I decided to run the London marathon in 2016 to raise money for the Royal Brompton at what will be just over a year after my operation, as I owe them my life and their intervention is the reason I have a future to look forward to. Even though I know it will be hard, I can’t wait to see what I’m capable of now that I’ve had my operation and it feels amazing to know that all I’ve got left to do is get better.

I never thought I’d say this but this operation has ended up being the best thing that’s ever happened to me. It’s given me an entirely different perspective on life and I just have this constant overwhelming feeling of gratitude. It’s helped me to see the bigger picture and appreciate things which would never cross most people’s minds. Just being able to wake up and know that I don’t have to worry about my future any more is an amazing feeling, and one I will never stop being thankful for. 

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