The way to my diagnosis, followed by a first heart surgery

Hi dear reader,

Hi dear reader, Welcome to the first blog about myself. I wasn't sure if I would want to and could write about myself. However, I have received many questions about it and from my work for heart foundations I am used to sharing personal things. So let's make a try .. What are these blogs about then? This will mainly be about my illness. I get a lot of questions about how I study, work, travel and exercise with my illness. I will tell you more about this in the coming blogs.  

Sick or insulting?

Where to start now? This is a tricky point since I can't remember myself when it all started for me. I think I remember it all really well since I was about 13 years old. I was in the 2nd year of high school where I followed a separate education, namely a theater course. This meant that, in addition to the standard subjects, we also had theater subjects such as drama, dance, singing, music and art. Halfway through the second grade I was increasingly bothered by extreme fatigue, often fainting and a lot of physical pain. I could no longer participate in the theater courses and I was particularly concerned with the physical subjects such as dance and gym. After a visit to the doctor it got the Pfeiffer stamp. Something that should pass after a period of rest. However, when this did not pass it was dismissed as anemia, extreme growth (because yes, I am quite tall) and overstrain. On this tour I went on and in the end it seemed to go a bit better. I went to school again, got more sense and energy to do fun things and was working hard with my future. My big dream has always been to become a pediatrician. This meant that I had to pass my exams. I therefore decided to switch to 4 VWO after the third HAVO theater class. A choice that I have regretted a number of times. The quiet school life where standing cum laude took no effort and I had all the time for my horses was over. I had to work hard at the beginning to recover in terms of level. This became completely difficult when I experienced severe fatigue again and often fainted. Of course this was again dismissed as stress ... something I started to believe in the meantime.

Until four years ago I felt palpitations. I remember the first time really good. I was busy in the stable when suddenly I got a terrible pressure on my chest, stabbing in my left arm, the whole world revolved around me and my heart was beating so loud that I thought it would burst out of my body. I hardly got a breath and didn't know what to do. This took a few minutes and then everything suddenly returned to normal. Besides that I was suddenly very tired, my body felt completely fine. It took a few days before the second one arrived. From then on they came several times a day. However, I could not find anything that caused them. Sometimes I got them while cycling, walking or riding, sometimes during household chores but also regularly when I was sitting on the couch, while I was showering or even during my sleep so that I woke up.  

The first time I went to the doctor with this, they listened to my heart and an ECG was made. There was nothing strange about this, so I was sent home again. A few weeks later I returned. In the meantime, the number of beats per day was considerable, and I also increasingly fainted. Again people listened to my heart and an ECG was made and I was sent home with the message that I had to take it easy and avoid stress.

A few months went by. My body ran out of energy and power, I barely managed to climb my horse and go to school, and in the end I almost never left the house. I was too tired to be able or willing to do anything. I lost a lot of weight, a lot of zest for life and ended up in a wheelchair to save energy where possible.

On a competition with my little girlfriend, meanwhile already in a wheelchair to last a few hours outdoors

Blessing in disguise; finally a diagnosis

At the end of December 2015 I fainted in the shower. I hit my head and got a lot of water inside. This was finally a reason to look further. I was referred to a pediatric cardiologist at the local hospital. This has carried out a number of investigations but nothing came out. I was sent home with a 48-hour holter. This is a box that constantly registers your heart rhythm. I had just handed in the box or I was already called if I could come back to the hospital because while reading the box details where showed that needed to be discussed. There I was, together with my father in the children's ward, watching giraffes on the wall, waiting for the results. You really can't call it a result actually. The only thing the cardiologist could tell at this time was that on average between 20 and 25 extra heart beats were seen per day. Of which a large part exceeded 220 beats per minute. This would cause a lot of my fatigue, since my body was running a marathon more than 20 times a day. In addition, it was told that it was also very dangerous. These extreme palpitations not only cause physical exhaustion, but if they get too high (above 230) your heart can also stop. All in all, I was referred the same day to the cardiology department at UMC Utrecht.

In the UMC Utrecht, various examinations were performed such as an ultrasound, an MRI and another holter examination. I was eventually told that I had a rare congenital heart defect. To explain it briefly in easy language, this deviation meant that I had an extra sinus node in an unusual place. A sinus node ensures that electrical stimuli are spread through which make your heart beats. An extra sinus node therefore provides too many stimuli and therefore ultimately palpitations. The solution for this would be the surgical removal of this extra node. This operation had to be scheduled in the short term to limit as much damage as possible and to secure me.

However, I absolutely did not agree with this acute panic from the doctors. For months my complaints were not taken seriously and now I would suddenly have to undergo an emergency surgery while I was in my exam year and wanted to arrange my admission to the university. My decision was therefore certain. They just had to wait until I had finished my exams. And so it happened. I was put on a high dose of heavy medication to ensure that my rhythm remained stable. In addition, I was checked in the hospital every week and I had to report and be constantly monitored. In the meantime, I worked hard from home or the hospital to prepare for my exams, determined to pass these, I worked through it. All lust for life was suddenly back.

Cardiac surgery number 1; On the way to health, or not?

Immediately after my last exam it was time. I didn't have the time to look up to it, it only came when I was admitted to the hospital. The operation was scheduled for the second day of my admission. I was so nervous! All these months I have been constantly sober and focused on passing my exams and surviving. But now I couldn't do anything except lie there and start this operation with confidence in one of the best cardiologists in Europe. The nerves and the cold shook me so much that 3 heat blankets had to come and my arm had to be tied in order to be able to puncture an infusion. A 7-hour operation followed. Recovering from the anesthesia was quite difficult. Once I recovered a bit, I just heard my cardiologist tell my mother that it didn't work. The abnormality was too close to the sinus node that you need and to operate there was too risky. He also encountered a second deviation. The same kind but in a different complicated place. He therefore decided after 7 hours to opt for safety and to stop. Hearing this news when you are just out of anesthesia, half drowsy and in a lot of pain was not very nice. Less than two minutes later, all the bubbles and lights on my heart monitor also started to rage. In no time there were 6 people around me checking everything and apparently at that moment I asked if I was dying now. It was "happy but" a malfunction in the device. Very funny if you just came from a heart operation ๐Ÿ˜‰ (Later on I laughed very hard about this, at the moment itself I just got grumpy).

The first 8 hours after the operation you must lie completely flat and still. You are literally not allowed to move anything. How terrible this was for someone like me who can never sit still... I also had to constantly pee through all the fluid that I received through the drip. The nurses had a hard time the first two days. I think I have never been such a bitch before (and again afterwards). I felt so bad. Everything hurted and all hope of getting better was gone. I had adjusted myself that this operation would change everything. I just had to go through the surgery and rehabilitation and then I would be healthy, have energy and could do everything that a normal teenager does. Unfortunately this turned out differently.

How it went on from here I will tell in the next blog.

A while after the operation I was suddenly very happy with my wheelchair.
Now i could still have a nice cuddle with my horse friends


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