A Difficult Time
This is an update on the difficult time I had, some days ago. Something I hope I don’t need to get through again, but maybe it also was a look at my future.
On November 20, I had a telephone appointment with the Heart Failure group nurse. This was because of all the coughing I was still having. Because the lung specialist could not find anything wrong with my lungs, they are now thinking that maybe it is because of some medication I am using. There are some medications, that have chouging as a side effect. It was decided that I would stop with one medication, for one week, to see if this would have some effect or not.
Normally it will take several days before it could have some effect. But I wanted to give it a try anyway.
During the week that I stopped with that one medication, things went downhill. The coughing was not getting less. Well, maybe a little bit, but in the evening I was still coughing a lot. I also started to feel worse by the day. It felt like everything cost me a lot of energy. Tired very quickly and quickly out of breath. During the day, while I was not doing anything, at some moments I had to just stop and catch my breath.
In that week, from Thursday until Monday, I was lucky if I could have 2-3 hours of sleep. Every time I lay down, I had trouble breathing. I was sitting more on the side of the bed, then lying down and sleeping.
I could only walk for maybe 100 meters, then I had to stop, catch my breath, and try to walk further. The future looked very grim at that time. I could not think that this would be my future. Not able to do much.
Even my appetite was really bad. In the morning, breakfast was okay. But everything after that was a struggle. Not in the mood for anything. I was eating some things, but only because I had to.
Although I was not eating much, I also was not losing weight. Sometimes I was even gaining weight. I already had some idea, that maybe I was retaining liquid/water. Also because of the problem sleeping and being out of breath. I was keeping an eye on how much liquid I was drinking, and trying to keep it also to a minimum.
After stopping that one medication for one week, I had contact with the Heart Failure group nurse again. To talk about how things went for that one week. I told her about the lack of sleep, being out of breath, having no appetite, and my weight, and she suggested taking the medication again. She also suggested to stop with my current pee medication and start with a new one. According to her, if you use the pee medication I am using for a longer time, your body starts to get used to it and at one point it will not have any effect anymore. So it was time for a new medication.
For the first three days, two tablets per day, and after that, one tablet per day.
Frequent Toilet Visits
On Tuesday, November 28, I started with that new pee tablet. And boy I noticed that. Normally with the previous pee tablet, if I would take it, it would take 2 hours before I had to pee.
With the new one, it was almost the same. But after that, every 30-45 minutes, I had to go to the toilet. I have no idea, how many times I had to go to the toilet that first day, but it was a lot. Luckily, near the evening, it slowed down.
That evening I also was able to sleep better again.
The next day, almost the same thing. After taking the two tablets, within one hour, I had to go to the toilet. And again, almost every 30-45 minutes I had to go. The third day, it was getting a little bit less. Now, I am on one tablet per day, and things have slowed down. I still need to pee, but less than before.
Also, my weight had gone down a lot. I lost something like 4-5 kg over 3-4 days. So, all the problems with breathing, being out of breath, and gaining weight, it was all because my body was holding on to water/liquid.
Slowly Feeling Better
Slowly, I am starting to feel better again. I think it is a combination of the medication that I had started again after one week and the new pee medication.
I can now walk further again. Still taking my time, but at least I can walk further than 100 meters. Also, my appetite is coming back. I can eat “normal” again, and now and then I also am graving for things to eat.
The sleeping is “normal” again. I don’t need to sit on the side of the bed for most of the evening. And the physio I have twice a week, I also started with that again, slowly.
This coming Monday, I will have a telephone appointment again with the Heart failure group, just to see how things went this past week. And after that, have an in-person meeting with my cardiologist. To see if there is anything she can do about my coughing. This must be coming from something, but the question is, from what? My GP already told me, that I have two medications, that are known for the side effect of coughing. One we already tried to stop for one week, but was for sure, no success. Maybe she will suggest stopping the other one, or see if it can be replaced with something else. We will see what it will be.
My experience of the last two weeks? There was one thought that came to me during this difficult time. I don’t want to use any foul language, but Heart Failure is a B**ch!
If this was a sample of things that are awaiting me in the future, then I am not looking forward to it. But at least it had given me some idea of what could happen. We just pray that it will not get that far.
Actually, I was slowly getting used to my life, but pneumonia made things “worse”. Now I need to get used to a slower/different way of life.
By now, it is December again. I am always afraid of this month. You never know what will happen, but several times it was not that good for me, healthwise. I will cross my fingers and pray that things will be fine this month.
As always, please be careful and stay safe. God Bless