Disclaimer: This story contains post-surgery images that may be triggering to some.
“I was always a child who wouldn’t need telling twice to go to bed. Although I enjoyed sports at school, in particular football, I would find myself struggling in matches and would spend the rest of the day in bed. I was diagnosed at a young age with exercise-induced asthma and had an inhaler to control this. I’d regularly get run down, ending up with chest infections and on steroids and antibiotics. I didn’t think too much into this and didn’t realize I was different. As they say, hindsight is a wonderful thing.
In 2011, when I was 20 years old, I booked an appointment with a doctor in North Wales. I told my mom, ‘I think I have a bad chest infection and need some antibiotics, as something just doesn’t feel right.’ I was getting so out of breath doing the smallest of things. Even going up the stairs felt like a huge task. I went to the doctor and told my mom, ‘I’ll be back in half an hour.’ My doctor’s office was up a hill, so I was out of breath on arrival. The doctor did her usual checks, but then started to be much more thorough than normal, so I started to get nervous and thought maybe something was wrong. She thought I had punctured a lung and wanted to send me to the hospital.
Once at the hospital, I had a chest x-ray and was seen by a doctor and his student. He checked me over exactly like the other doctor did and asked if it was okay if his student could also examine me. While the student was listening to my chest with his stethoscope, the doctor asked him, ‘Can you hear a murmur?’ My mom suddenly sat up to attention. The doctor then turned to me and asked, ‘Are you aware you have a heart murmur?’ I looked at him blankly, and my mom had to answer for me. ‘No,’ she said in a concerned voice. He then proceeded to question me about my heart: if I got palpitations and if I was aware of my heart beating daily. I was confused, as I thought being aware of your heartbeat all the time was normal, but I was now realizing it wasn’t.
I was then told my heart was leaking! I was fitted with an ECG monitor and remained in the hospital for three nights while they performed numerous tests and examinations. As a 20-year-old who just went to the doctor for breathlessness, I was completely overwhelmed and overcome with emotion and anxiety. On the day I was discharged from the hospital, I was diagnosed with severe aortic regurgitation and mild dilation of ascending aortic root. ‘I’m sorry to tell you, but you need open-heart surgery to fix this. You will have this at Liverpool Heart and Chest Hospital.’ I can still hear this being said to me when I close my eyes.
My whole life was flipped upside down in a matter of 4 days. Later that week, I met my heart surgeon and cardiologist. Little did I know, I would still be in regular contact with him nearly 10 years later. While I didn’t really understand much, he explained to me in more detail about my condition, ‘You have a bicuspid valve; you would have been born with it.’ Due to my age, my cardiologist wanted to prolong surgery as long as he could. On the long drive home from the hospital, I was filled with so many mixed emotions. I was relieved I wasn’t given a date for the surgery, but also hated knowing it was an inevitable date in the future, a big cloud looming over me. I was forced to accept my life would now revolve around tests and regular medical appointments.
In between regular ECGs and echocardiograms, I worked full time at a nursery. Late 2013, I started to feel winded when I picked up a child, and as soon as I’d get home, I’d sleep the weekend away. I knew my heart was struggling, and the date of my surgery was getting closer. On the next visit to my cardiologist, I explained my day-to-day changes and he replied, ‘It’s time, I’ve just been waiting for you to say it’s been affecting you.’ I will never forget how casually he opened his calendar on his computer and asked me what date I would like for surgery, just as if he were booking me in for a hair appointment. I knew this day was coming, but I still wasn’t prepared. How are you supposed to prepare yourself for such a life-altering event?
My family advised me to wait until the New Year so I could enjoy Christmas. So, it was decided/ I emailed my cardiologist and he replied, ‘I will pencil you down for January 14, 2014.’ I absolutely hated that Christmas and the New Year. I couldn’t relax, sleep, or get involved in family festivities. I considered writing letters to family members just in case I didn’t survive. On New Year’s Eve, instead of cheering and celebrating, I burst into tears. I was so scared for the future and how my life had changed so much since I had been diagnosed, and the realization it was only the beginning. As everyone does, I spent numerous hours Googling my condition, trying to search for reassurance. However, what I discovered was quite the opposite, scrolling through many horror stories of surgeries gone wrong. I felt so alone and really struggled to control my emotions.
The day of my surgery was finally here. I arrived at the hospital in the early hours of the morning with some of my family. I was sick in the parking lot due to fear and nerves. Because of my age, my cardiologist thought it was best if I had a tissue valve replacement to last at least 10 years. It also meant less medication and allowed me to have a family if I wanted to. He explained to me I would also have an autoplasty on my aorta to make it narrower. I vividly remember putting my signature on a piece of paper that said, ‘Side effects—stroke and death.’ I turned to my family and said, ‘I’ve just signed my life away.’
Waking up in ICU after having open-heart surgery is the most surreal feeling ever. I recall being so drugged up and looking down at my body but not being able to feel a thing. I was hit with the relief of survival, but the worry of having such a big procedure and the effects this was going to have on my body. After a week of pain and discomfort in the hospital, I was finally allowed to go home, and I couldn’t wait! I then started cardiac rehabilitation, where they put you in a gym with multiple other patients, all of which were nearly triple my age. I felt so out of place and couldn’t help but ask myself, ‘Why me?’
I struggled to do basic exercise, and as a result, was put on beta-blockers to regulate my heart rate. The road to recovery was slow and hard, with many tears and pain. I had to adjust to a lack of physical ability to do daily tasks, and also to the 8-inch scar down my chest, which, as a 22-year-old girl, I found hard to deal with and still do to this day at times. ‘I’m still waiting for this new lease of life I was promised,’ I said 6 months after my surgery to my cardiologist. To which he replied, ‘Your body has been through a lot—it’ll take about a year to fully recover.’ I knew I had just been through such a huge life-changing experience. I felt the need to share my journey and discover people of a similar age going through the same thing.
I didn’t want someone else to feel as alone as I did when I was diagnosed. I set up a social media account called Beating Hearts. I shared my journey, facts about heart disease in young people, and emphasized it is the biggest killer in the UK, yet there is little information for young adults. The majority of information online is geared toward heart attacks. Beating Hearts was almost like therapy for me, sharing my journey in my own words, and the more I was posting, the more people reached out to me of a similar age. My only regret is I wish I had set it up sooner. I was learning so much about heart disease, and also teaching my family and friends about this huge complex disease that has so many different types of conditions and affects everyone and everyone differently.
It’s so easy for people to think you’ve had the surgery and you’re now ‘fixed.’ They don’t realize it’s a lifelong condition, and it’s frustrating as a heart patient to constantly feel like you have to express how a normal day can be a struggle and the mental impact it has on your life. Through creating Beating Hearts, I have been lucky enough to be involved in many great events raising heart awareness, share my story with large groups of people, and even have had an interview on BBC Wales. I also featured in the X-Factor’s Rebecca Ferguson’s music video, ‘Superwoman.’
One of the most terrifying, but incredibly rewarding, things I have done post-surgery was a photoshoot with a photographer for the Behind the Scars campaign. Getting my scar out for the world to see was a huge thing for me, as I still don’t like to wear low-cut tops and keep it hidden on a daily basis. While having all of these amazing opportunities to raise heart awareness and creating friendships with heart patients all around the world, I started to notice I was getting run down and more out of breath. I was getting worried something was wrong, and in a regular check-up, the results of an echocardiogram showed there was. My cardiologist said, ‘We need to do some more tests, you could have a mismatch valve, or it’s deteriorating quicker than it should.’
Due to my cardiologist moving to a London hospital, I was put under the care of someone new. He told me I was lazy and referred me back to cardiac rehabilitation. I felt instant disappointment and a lack of trust in my new cardiologist, as I knew my body, and I knew something wasn’t right. I contacted my old cardiologist for his advice, as I trusted him. He told me to give cardiac rehabilitation a go for 6 weeks and see if there was any improvement. I didn’t know if I was coming or going, I felt like I was going around in circles and hated repeating tests, a feeling I am all too accustomed to nowadays. After showing no signs of improvement, I was finally referred to London to be under my initial cardiologist/surgeon, which provided some familiarity.
Due to the deterioration of my valve, it was time for my second open-heart surgery, many years earlier than I was told it would be. It was somewhat easier the second time around, as I knew what to expect, but still a terrifying and unpleasant experience nonetheless. This time I had a mechanical valve fitted, which now means more daily medication. Due to the strain of two surgeries, I now have a leak in my mitral valve which adds to my list of worries and fears for the future. I see others my age being seemingly careless on social media, without health concerns and the freedom to dream positively about the future, and it fills me with envy and even jealousy.
6 months after my surgery, I was still attending cardiac rehabilitation twice weekly, my tachycardia was still playing up, and I was referred to a local cardiologist. On the morning of my 28th birthday in 2019, I had a loop recorder implanted into my left breast. This came with a monitor to keep at home which sent recordings straight to the hospital. My loop recorder was implanted under local anesthetic, and being awake and aware of the procedure brought back a memory of a recurring nightmare I had after my second surgery, in which I woke up while on the operating table. Due to this, I went into a state of shock after the procedure. I went really cold, shaky, and had to hold back tears.
January of 2020, I woke up to a missed call and voicemail from the cardiologist about implanted my loop recorder. In the voicemail, he said, ‘I’m sorry to say your loop recorder has shown alternating bundle branch block on your latest download, and you need a pacemaker implanted.’ I got a letter through the mail and was booked in for March 9, 2020, to have a pacemaker implanted and my loop recorder removed. A few days before the UK went into national lockdown due to the coronavirus pandemic, I was lucky enough to get my pacemaker fitted and be home ready to shield under the government’s advice for the last year.
My life has changed so much in the last 9 to 10 years, with so many hospital appointments, tests, surgeries leading to complications, and lifelong medication. I’ve been through so much, but I know my journey isn’t over and I still have a long way to go. Each time I undergo another surgery or procedure, I learn a lot about myself and what my body can overcome. It’s such a scary position to be in, to have such life-threatening procedures in your 20s, and I do worry for my future and what will and won’t happen. However, because of my journey and setting up Beating Hearts, I have had experiences I hope have made an impact on heart awareness.
I have made close friends and networks with many people of all ages and different heart conditions. It has made me more empathetic as a person, and I have learned not to judge a book by its cover. Going forward, it would be lovely to have a few years of no complications or procedures, and I hope to continue to spread awareness. I have many more opportunities with Beating Hearts and working alongside charities.”
This story was submitted to Love What Matters by Becky Morgans of Chester, England. You can follow her journey on Instagram and Facebook. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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