Agathe Dugleux

When having to tell my story with heart issues, I never know where to begin. Should I start at the first symptoms followed by 10 years of medical blackout and misdiagnosis, or should I only focus on the years my condition was finally recognised? Today I decided that my story started when I already knew, inside of me, that something was truly wrong with my heart; but yet, no one believed me.

A clicking feeling in my heart, the impression that a light switch has been turned on, this is what it felt like. A light that burnt inside my chest making me feel like my heart would jump out of my body. My heart was racing, I could feel every beat. I was sitting at my desk doing my homework like a normal 11-year-old when the tachycardia first came. That night, my mom took me to the closest doctor. The tachycardia was already gone when we arrived there, and without many exams, the doctor decided it was a panic attack. He asked me while laughing if my parents were ordering me to do the dishes too much.

From that moment, I continued having very sporadic episodes, maybe once a month, of what we thought at the time were panic attacks. I saw a total of four cardiologists that did not listen to my symptoms because, I quote, “you are too young to have heart problems”. One of them even told my mom “your daughter is crazy, you need to calm her down” and “it is just anxiety”. I was a young girl, and no one listened to my worries. They ordered very basic exams and nothing was done to find a proper diagnosis. I still wonder if the anxiety etiquette would have been stuck to my case had I been a man. I was young, yes, but I knew inside of me that something was not okay. I knew my body better than anyone else.

In 2017, when I was 21 years old, my symptoms abruptly got to a whole new level. I woke up at 4 am one morning in July, and felt like my heart had stopped right before going completely out of control. I was extremely dizzy, I could not breathe properly and I could not stand up at all. I called an ambulance. The paramedics quickly arrived, and when carrying me to the ambulance, I told them that I had felt like that before and that those were panic attacks. Fast enough, I was plugged on every heart machine, and the paramedic told me that that was for sure not a panic attack. I was moved to the hospital and stayed there for 5 days. The diagnosis was still unclear after several exams. Doctors told me about issues of partial branch block, repolarisation and, most importantly, a sinus tachycardia that needed investigation. I was given my first beta-blockers to reduce my heart rate, which would then be followed by a dozen of different beta-blockers and other treatments.

At the end of 2017, I was told not to exercise anymore because we did not know exactly what I had. My heart would stay above 120 BPM while resting. The number of episodes increased dramatically: I passed from once a month to multiple times a week, sometimes daily. I had to drop my sports club at university and lost friends because of my incapacity to go out. I was given many treatments during 2017 and 2018 but none really worked without giving me plenty of side effects. I decided to meet a fifth cardiologist, and in August 2018, I met my now favourite doctor of all: a cardiologist specialised in Electrophysiology. When I explained my story to him, he believed me right away and ordered an electrophysiology study operation. In December, thanks to electrophysiology, I was finally diagnosed with atrial tachycardia and potential inappropriate sinus tachycardia. Putting words on my symptoms, and finally knowing that I was right the whole time felt good, even though it meant knowing I had a heart condition. This was confirmation that something physical inside my heart was creating my symptoms.

In May 2019, I decided to go for my first ablation. I was given high hopes of success and the promise to get back to a fully normal life. Unfortunately, the operation failed. I was told there was either some atrial tachycardia extremely close to the sinus node left or Inappropriate Sinus Tachycardia, which could not be ablated for the high risk of ending up with a pacemaker. Sadly, I had tried all possible medication treatments for my issue and was left untreated. At the end of the year, I was told the difficulty to project any pregnancy in the future with a sustained resting heart rate always above 110BPM -above 120BPM when standing-, without any working treatment. That would be a high risk for me and the baby, therefore not recommended at all.

My lifestyle at this point was pretty much non-existent. I was having daily episodes on top of the constant symptoms, and a resting heart constantly above 100BPM. If I walked I would be at 130BPM minimum, climbing a few steps of stairs would be 150BPM. I could not bend forward as this was a trigger, I could not clean my cat’s litter, do the dishes, be in the summer heat, or take a shower without feeling faint. I had to watch my diet as sugar, fat, carbs, chocolate, bubbly water and additives were all triggers for tachycardia. Hormones for my periods, tiredness and stress also worsened my symptoms.

Living like this was really hard. While I was lucky I was not “dying”, doctors would not understand my anxiety and depression coming with the disability of my chronic condition. Our lives were turned upside down for my partner and me, having to deal with daily symptoms and the impossibility to enjoy little things from life. I was always with the next crisis hanging above my head. Was it going to be during an important work meeting, at the supermarket, or while driving? Knowing the nurses’ names at the emergency services is also not normal. This was not a normal life, and going through it required a huge amount of strength.

At the beginning of 2020, my cardiologist told me he had discovered an innovative surgery in Belgium during a cardiology summit, and he decided right away to send me there. This time the plan was to pass through my ribs in what’s called “a thoracoscopic way”. The surgeon proceeds to the ablation from inside and outside the heart at the same time. My social security did not agree to pay for the surgery and not only I had to prepare mentally and physically but find the money. Luckily, I started a crowdfunding campaign and received a lot of financial and mental support from friends, family, colleagues and even people I did not know.

On 26 January 2021, I had the immense chance to be on the operating table for 7.5 hours; I woke up in ICU and was blessed to hear that the operation had been a success. The time in the hospital was very scary and left a lot of post-op scars on my mind. In February, I was doing my respiratory physiotherapy, and in March I entered a cardiac rehab centre for a month. There I taught my body how to do sports again, and received some mental health support. I discovered what is life with a calm heart, I do not feel every beat of my heart anymore! My body is less tired and I can enjoy the little things of life again.

While being physically recovered from it now, I am far from being recovered mentally from the 12 years of sickness. I still carry issues of trust in the medical field, I am still scared my life would return to how it was before and, most importantly, I am allowing all the years of emotions to finally come up because now I have the physical strength to do it. I am followed by a psychologist every week who is helping me accept and forgive those years of suffering. I finally see the light at the end of the tunnel.

My advice to other young heart patients

Living with a heart condition was my biggest challenge in life. It takes time to accept that your body will probably never be the same. Sometimes you try to understand why all of this is happening and of course, nothing makes sense when answering that question. I lost my identity for a while during my sick years, I had done 14 years of gymnastics, I was very active, preparing a half marathon in 2016/2017 before having to stop everything. Sports was my whole life, and taking this away from me was a hard step, I thought I was worthless and had nothing else interesting to do. Later, I discovered other things that were possible with my new normal, such as reading, playing music and now in the rehab centre I started acrylic painting.

For me, social life was completely different. People generally understand and support you when you are first diagnosed, but when the illness lasts for years, with no clear diagnosis for a while, no one but you and eventually your partner will understand what is daily life like, and the impact it has on you mentally and physically. Many people will offer “natural solutions” or tell you to reduce your stress to cure your heart problems. Many people did not believe and still now do not understand that my tachycardia was NOT PANIC ATTACKS. Sometimes it feels that your condition defines you, your whole life, and how people behave with you. This is applicable to all chronic illnesses. It can get lonely at times.

However, my advice is to really maximise and focus only on the people that are here for you in the long run. I personally made new friends from the community of tachycardia patients online, this helped immensely because we shared the same lifestyle and we knew how to support each other. Later on, my “twin” Lindsey which I met through this network of tachycardia patients, also got the same innovative surgery and is also learning to live her new life. I feel deeply connected to her, and I am extremely lucky to have had her through my surgery and recovery, and I am happy to be here for her now that she is the one going through it.

In terms of career, I was lucky to have been working in very understanding companies while I was ill. They provided me with flexibility, mental support, and they did not make me feel guilty about being unable to sustain normal working life. But I know that it is hard in some other companies. My personal advice is to be open about what is happening and what you are going through. It was always easier for them to understand when I explained clearly what my condition implied, and what they could help with.

Finally, MENTAL HEALTH. I believe this is the biggest and hardest part of living with a heart condition. In the past, I was diagnosed with both anxiety and depression related to my health, and from my research, it looks pretty common for people with cardiac conditions to go through mental health issues. However, none of my cardiologists were aware of the impact of physical heart symptoms on mental health. I believe there is a huge gap for improvement on the medical side here. I noticed that many cardiologists underestimate the impact of the conditions on people’s life and constantly compare individuals between them in terms of abilities, but every patient is different and having the same condition does not always mean having the same symptoms, the same physical capacities and the same ways of dealing with it mentally.

For the medical staff, please listen to your patients. Each individual is different, symptoms sometimes tick no clear boxes, but we need you to always stand up for us and look everywhere you can to put down a strong diagnosis and provide solutions for our issues. There is no “too young” person to have something wrong with their heart.

My final words would be that, while the last three years have been the hardest of my life, today I realise how important they have been for me. I realised how strong and resilient I am, I learned the value of life and how important small things are in life, such as having a walk. It was the worst and the “best” part of my life in a way, because from my lowest point to now; it made healthy life even more colourful. I am officially on the brighter side of life as I like to call it.