Rehabilitation, heart surgery number 2 and ME?

Hi dear reader,

In the previous blog I told you about the path I took until I got my diagnosis and about the subsequent heart surgery. I will continue where I left off.

The period after my first heart surgery was difficult. On the one hand came the realization that I had to be grateful that I came out of the operation well. On the other hand, the tellor position that the failure to make me better was great. At that time I was very uncertain about my future and did not know what to focus on. That ultimately became the rehabilitation.

After an initial period of complete rest, as far as I can, it was time to quietly build things up. From walking small parts to climbing stairs, cycling parts and doing things in the stable. All this under the guidance of my beloved rehabilitation therapist, whom I regularly wished for very bad things (If you read this, sorry for that 😊). I was in the gym 3 times a week. We started with 2 minutes on the treadmill at a snail's pace, small weights of 0.5 kilos and 2 minutes of cycling without resistance. After months of hard work and a lot of pushing from my rehabilitation therapist, we came for almost half an hour at almost running pace, cycling for fifteen minutes, being able to lift 10 kilos, but above all I felt like I was human again.

Unfortunately, my heart condition did not change. The many palpitations continued and my energy remained incredibly low. Where all my former classmates were busy with exam parties, exam trips, fraternity hazing and intro weeks at universities, I went every week to rehabilitation and to the hospital for checks. Besides that I also tried to enjoy the summer, my horses and the peace as much as possible. Real life started again in September, which meant studying for me at Utrecht University. Just like the last 2 years of school, I did this from home as much as possible. An advantage of studying in Utrecht is that I could, and can, combine my hospital visits with lectures. Saves another trip to Utrecht 😉. The first school year passed and little changed in that year. I continued to go to rehab to continue to build up my condition and I continued to go to the hospital for checks and examinations. It was clear that nothing could be done about my heart at that time, so it was continuing with medication and a strict way of life. In the meantime I started to enjoy things like an evening 'out' with friends (which meant for me; eating a snack or watching a movie and then getting back to bed no later than 10.30 pm), horse riding, traveling, etc. Had to adapt this a bit but this did not make the enjoyment less.

End of the 2^nd summer after my surgery I declined enormously again. Twice I had to be taken by ambulance to the UMC Utrecht. My heart did strange things. However, this was not everything. I was inexplicably exhausted. CFS / ME was diagnosed after a period of testing. In other words; chronic fatigue. This is a diagnosis that many people unfortunately do not take seriously. However, it has been proven that it has a huge impact on one's life and body. It got so bad for me that after a while I slept between 17 and 20 hours a day and the function of a number of organs deteriorated. My body simply no longer had the energy to keep everything going. At the beginning of 2018 it was decided that I should be admitted to a rehabilitation clinic for chronic fatigue. A whole intake process followed (it turned out that you are not easily admitted) and soon I was placed on an emergency list. However, then came the message that a third heart defect had been found and that a second heart surgery was needed. We decided that we would first do the surgery with a period of rest and a short cardiac rehabilitation. After that I would be admitted to the rehabilitation clinic for ME / CFS for a few weeks.

On friday the 13nd of april (Yes really, friday the 13^nd) the operation took place. I was very relaxed this time. I think because I entered this operation without expectations and already knew what was coming. Until I collapsed in my anesthesia I had a discussion with the cardiologist and two OR assistants. I was still putting forward my argument when I dropped out. I don't think I have been able to properly defend my position.

A long, for my parents, nerve-racking operation followed. This time with good results! Two deviations could be removed. This should improve my heart function and significantly reduce the number of heart beats. Relieved, I entered the first period of rehabilitation.

At the beginning of June it was time to move into the rehabilitation clinic for ME / CFS. I have had a pretty hard time here. Not only physically but also emotionally. You have to stay internal for the first few weeks. Then you go home once a day for the weekend and from then on every weekend for 2 days. You get different types of therapy. Every morning we started swimming for half an hour. Then the day was filled with fitness, psychologist, occupational therapy, haptotherapy, social work, sports groups and of course rest. This program should help you with the processing of things such as your illness and the efficient use of the energy that you do have. Through the sports activities they try to increase your fitness and to get more energy out of this. I ended up spending my entire summer in the clinic. I had very precious moments here and learned a lot about myself. After a few weeks I didn't even want to go home in the weekends anymore. The big difference between the structured environment of the clinic and the anything but structured life at home caused a lot of fear. At home I constantly went wrong again. Still working an hour longer with the horses or a 'short' meeting with someone in the evening. Oh, there is a sale? Take a quick look, which then changed into an entire afternoon wandering around the city. And the result? Being completely exhausted every time. We have been occupied with this a lot during occupational therapy, but it remains a stumbling block.

The first period the rehabilitation process seemed to work. I seemed to get more energy and did well on much less rest. However, this changed drastically. After almost two months I started to faint a lot and needed my wheelchair again. This went from bad to worse and after 3 weeks it was decided to stop the route and I left home. Another disappointment, again no prospect of a better future and another, in my opinion, wasted summer.

In the last few weeks of the clinic I opted for surgery. In addition, I have been busy organizing an action day. I will tell more about this in the next blog