Saturday, November 5, 2016

Home is where the heart is - Part I / II / III.


A few days after 'D-day' I was able to write a next message: 'Alive, and (almost) kicking'.
But as you may have noticed, after that I needed time to focus. Focus on my body, which has had a tough time.

At first I was happy I could leave the hospital on Wednesday, October 12th. I can write a book full of (sad) experiences, I was so ready to leave that 'factory'.
Home is the best place to fully recover. That day started 'Home is where the heart is - Part I'. But.. Could I already handle a two-hour drive to my parents place, without getting nauseous? Could I already climb up the stairs to reach my bedroom, after only one meeting with a physiotherapist? Will my body (and mind) handle the atrial fibrillations, after changing the medication shortly before I left? Besides uncertain, I felt unstable.

Before the surgery, I have had several talks with specialists about the whole procedure. No doubt it would be tough. Though, I am still surprised about the fact that I was the one who had to mention the subject 'complications'. All they said about it was: 'No need to talk about it', 'It mainly occurs older people', 'You are in a good shape', 'Percentage is less than 1%'. I understood what they said.. But what if I am the 1%?

I am glad my parents and I discussed everything in detail. United, we are stronger and wiser. After only one night in my own bed in Dalfsen, not feeling well at all, the doctors from the Amsterdam Medical Center advised me to go to the closest 'First (Heart) Aid'.
The trouble started. On the ultrasound they saw that I had too much liquid behind my heart, causing extreme fatigue and dyspnea.I had to stay. The next day, Friday October 14th, the doctors of Isala Zwolle decided to bring me back to the Amsterdam Medical Center by ambulance, since the surgery had taken place there. Unfortunately (I felt) both hospitals did not agree with each other, so in the end I was send home. Again.

'Home is where the heart is - Part II'. My mother made a delicious dinner, at least I had appetite. That night, a serious atrial fibrillation started just before my ear touched my pillow. Annoying and tiring, but I kept being positive: 'It's part of it!'. Confident but with varying heart rate, I started to make breakfast the next morning. I only remember the moment that I sat down as soon as possible and called my parents from upstairs - Half an hour later I was lying in a hospital bed. It took the doctors a few hours to get my heart rate down: it fluctuated from 170 to 120, and back again. The liquid behind my heart had increased. It was the first time my parents saw that I lost my positivity, I was tired of being strong. I had to stay.

After no progression over the weekend the local cardiologist decided to do pericardiocentesis, a procedure that removes fluid from around the heart. On Wednesday October 19th I already lay on the operating table, pretty afraid of what will happen, when the surgeon decided not to carry out the pericardiocentesis. The risk to touch my heart or liver was too high, because both the place of the liquid as my petite body. I appreciated his decision but of course it was very disappointing. All the time I was in good contact with my congenital cardiothoracic surgeon Dr. Koolbergen as well.

I lost confidence, but I felt taken seriously. Change of medication gave me a number of stable days and my body got a chance to recuperate. When I left the hospital again on Friday October 21st, I was more than ready for 'Home is where the heart is - Part III'.

3 times a charm: the last ultrasound showed a slight decrease in liquid. I am still at home, at my parents' house. Despite the intense feeling of 'up & down', I finally feel progression. Everything takes a lot of energy, even writing this blog.

I promise to be back, as the writer who I was before..