The Search Continues, Part 2

A forest road
Photo by Zach Reiner on Unsplash

The Search Continues, Part 2

The search continues, part 2. In the previous post, you could read how things were going and what the next step would be.

I would get a PET scan and hopefully, the specialist could see more from that. Also, my GP could maybe get some information in regards to my loss of appetite. Because this is also still playing.

In the meantime, I also had a general talk with a nurse from the Heart Failure group. Especially in regards to the part where I am out of breath a lot. Her advice was to continue using the pee medication every day, for maybe two weeks, and then see how things go. One of the things she wanted to check for sure, is how the kidney is going with with using the pee medication every day. So I had to do a blood check.

The PET Scan

For this, I had an appointment in a different location, on November 2. The hospital where I am is, they have different locations in the area. For the PET Scan, I had to go to the location in Utrecht. Here I could have the PET Scan earlier than if I had waited to get it in my original location. This was not the first time I had a PET scan. I already had 2 when I was in the hospital at the beginning of the year. But still, you hope that things will work. One day before the scan, I had to drink more water. On the day itself, I was not allowed to eat or drink anything, 6 hours before the scan. I was only allowed some water with my medication. Also the day before the scan, you are not allowed to eat any carbohydrates. There was a whole list of things you were not allowed to eat and a shorter list of things you were allowed to eat.

The scan itself went fine. Luckily, I did not cough while they were making the scan. If I had coughed, then they had to do the scan all over again. One day ago, I got the call that an appointment was made for November 17, to get the result from the lung specialist.

Bike or Stress Test

On November 6 I had the bike or stress test. With this test, they want to see how your condition is and what they would advise. Follow the cardiac rehabilitation once or twice a week.

I was a little nervous because I had this kind of test already once, several years ago. And then it did not go that well.

This time it was maybe worse. Normally you sit on a home trainer and they tell you to what speed you need to stick. During the time you ride the home trainer, every few minutes, they raise the load and the pedaling will go heavier. But you still need to stick to the speed they tell you.

The first two minutes were okay. Then they raised the load for the first time and immediately I had to stop. It was too much. I got tired so quickly, and out of breath, this was not normal. She told me to slow down but still keep on pedaling. During all of this, you are connected to a monitor on which they can check all your vital data. This is all recorded and reviewed later during a team meeting. This then will decide if you will get the cardiac rehabilitation once or twice a week.

For me, I was told that they want to do it twice a week. But if at any point I feel that it is too much for me, they can switch me to the once-a-week group. I have my doubts about all of this, but we will see how it goes. I will already start next week.

November 14

On this date, I will have my second talk with the social worker. I think I really need this. There are several things that I have inside that I would like to talk about. More health-wise things. Things that are starting to eat on me. After this meeting, I will start with my first cardiac rehabilitation session.

Things that are starting to eat on me, are more things like, that my strength and perseverance are starting to give up on me. I am so tired of all the health problems that I have, that you would like to give up. I am getting sick of it. It is getting too much, for too long. I thought that mentally I could handle this, but it is starting to have a negative effect on me. So it is good that I can talk about it.

Especially the coughing, every day, almost the whole day. Also, people around me are starting to make sounds that they are getting tired of it.

The other thing is the lack of sleep. Or not enough sleep.

Another Rough Night

Last night was a rough night again. I was tired and I really wanted to sleep. But I could not. For some reason, I could not fall asleep. Just keep on turning and turning. And when I found a nice or good position, then I had to get up because I was out of breath. I was sitting more on the side of the bed trying to catch my breath, then sleeping. I think of the whole night, I only slept for 2-3 hours.

And when I finally fell asleep, then my alarm went off. Time for my medication. After that, I tried to get back to sleep again, but no luck. I was so tired and wanted to sleep so badly, that every time I had to sit on the side of the bed, I almost cried. All out of desperation. I tried several times, but no luck. Just lay down for a few seconds, and then had to sit up quickly because I was grasping for breath.

After a few tries, I just gave up and got out of bed. Now during the day, I want to sleep so bad, but I will just wait for the evening and hope that I will sleep better. The social worker told me last time, that it is okay to take a short nap during the day. Maybe for 30-45 minutes. Then at least the rest of the day you should be okay. But right now, if I would do that, I would have problems falling asleep again. So better stretch it until the evening and hope to sleep in one long go.


In the coming days, there is a lot coming. I just hope that they can find something on the PER scan and find a way to stop the coughing.

And hopefully, they also can find something for that I am out of breath. Sometimes for no reason. Sometimes I am just sitting on the couch and suddenly I am out of breath. This is the strange part. Normally they will say that it is because you are retaining too much liquid. But the other time, I also heard that it could be because of the weather. When there is a lot of rain or if the humidity is high, you also could be out of breath. And to be honest, last night it had rained a lot and the humidity was high. So double bad luck. Maybe this is also something that I could try to talk to the heart failure nurse or my GP about and see what they say.

As always, I want to leave you with this. Please take care, and be safe. God Bless.


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