Harriet D's Story

Updated: May 7, 2020

A doctor discovered the hole in my heart by complete chance.

Just after I turned 22, I had a contraceptive implant fitted incorrectly. I went to the doctors to have it taken out and as contraception can have an impact on your blood pressure, I reported that I had occasional heart palpitations. The doctor listened to my heart and told me I had a heart murmur and referred me for a scan.

My mum (a doctor) thought it was a mistake, as I have had my heart listened to on a fair few occasions but said I should go anyway. Turns out I had a 2.7cm hole that had been present for my entire life, without me knowing about it which could have put me in real danger. In that sense I was very lucky, in other ways I was not so lucky. I was just about to graduate, I had it all planned out, involving a few months of working before travelling round Australia, something I’d been looking forward to for months.

The second half of 2019 was filled with countless tests and miscommunications about my surgery. I was given many different dates and constant conflicting information, making the whole experience very stressful. I was led to believe it was likely to be the smaller keyhole surgery. During a hospital visit to get more tests done the doctor dropped the ‘open heart surgery’ bomb out of nowhere. My mum grabbed my hand yet I was almost calm and unshaken, with the news not sinking in until a fair bit after the appointment. A nurse went through the basics of the operation and life support machine, informing me of the incision down the centre of my chest, the sawing of my ribs, the deflating of my lungs and the fixing of the hole itself. I had to sign a document saying I understood the risks, including death, organ failure and brain damage. I didn’t cry until we were back in the car.

Every time I sat in that waiting room in the hospital 50 miles from home, I received more bad news. I had gone from being a healthy 22 year old to what felt like a poor sick invalid. I felt like I had had my freedom taken away and was left with this uncertainty about what was going to happen to me and when. I couldn’t plan or commit to anything, which was a genuine struggle for me as I am quite a sociable person and absolutely hate missing out. I didn’t know a single person this had happened to, and no online forums had people of my age or situation to talk about it with. Despite being supported by family and friends it was one of the loneliest times of my life.

The uncertainty was unbearable, but when I finally got a surgery date I felt more relaxed. I did a good job of remaining positive and often I laughed the situation off (which is my bizarre coping mechanism). When asked if I was scared about it, my answer was often no, and that I was more afraid of the scar I would be left with afterwards. Driving to the hospital knowing I was going to have this big operation was a bizarre feeling. It went as well as possible, with only one night in intensive care but whilst there I had a panic attack. It was a lot more difficult to breathe than expected and I was really scared. I got moved the next day to my own room and managed to stand up the same day. I had to do breathing exercises and my shoulders curled protectively around my scar, making me hunched over. I had to do multiple walks along the corridor a day and the drugs made me sick, making sleeping through the night hard. Visiting ended at 8pm, meaning I spent a lot of time on my own. Everyone else on the ward was above the age of 50 or so, making me feel even more so like I shouldn’t be there.

The first time I saw my scar I cried instantly. Many tried to comfort me saying it was my ‘war wound’ and a representation of ‘how much I’ve overcome’, but I felt like I was previously healthy and that this scar (and operation) was unnecessary as I wasn’t battling or overcoming anything. Being 22, I felt like I am in ‘my prime’ and that this is the time of my life I should be looking my best and wearing whatever I wanted, and I felt like that had been ripped away from me.

I got released from hospital 5 days later. I weened myself off the painkillers within a week or two and tried to get back to normal as soon as I could though I struggled with concentration and my memory. One month after the surgery was my birthday, where I went to the pub and had a party the following day. I chose this time to reveal my scar, as I had made the decision that it was not going to dictate what I wear and that if it was going to be there forever then I might as well start as I mean to go on. I decided I wanted to be as open as possible, so I could be the person for someone else struggling to talk to, something I really think would’ve helped me at the time.

Since then, I attended cardiac rehab, the group of which consisted of me and 7 men, a minimum of 30 years older than me each. They were nice and it was great to talk to people with similar stories, however I got many looks and questions as it was evident I didn’t fit in. It reinforced even further how I felt like I was so unlucky that this happened to me at this age and how I will always feel like a bit of an anomaly. I also took part in a research study, again told there was no one around my age, but I felt as though I was helping and that it was important for me to do it. I kept a log of my scars progress, to remind and convince myself that it was improving with time.

I was determined to progress with my life plan, leaving this whole chapter behind me. I did my course of rehab, finished my research study, got a job in PR and booked my travelling (which has now been cancelled due to coronavirus but that’s a rant for another day!). Now 6 months on, I still struggle with my appearance since the operation and don’t think I have processed all of the emotions and things that happened to me that year.

Though I don’t yet love my scar, I am so thankful to be healthy and as time passes, I become more appreciative of the fact that the operation was able to prevent something worse. I am back to normal, I am more confident every day and I am eager for other young people to know of stories like mine to relate to.

#OpenHeartSurgery #Healthy #Scar #YoungAdult

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