Heart failure. It’s For Life.
My Personal Story, View, Experience.
Life hasn't been easy for me since 2012/2013. You can read my other stories, "A Bacteria Changed My Life" and "Living With Heminopia". And then this story. (Then there is also the problem(s) with my kidney, but that is for another time.)
"Heart Failure. It’s for life." Why write about this? And why is it for life? In 2018 it was discovered during a regular heart checkup, that I had heart failure. When I heard it, it had a big impact on me. But it also can have an impact on the people around you.
Suddenly you are limited in your doings and you find out, that you have to change your way of living.
What is Heart Failure?
Heart failure is a chronic, progressive condition in which the heart muscle is unable to pump enough blood to meet the body’s needs for blood and oxygen. Basically, the heart can’t keep up with its workload.
These are some of the symptoms you can have;
- Shortness of breath when you exert yourself or when you lie down.
- Fatigue and weakness.
- Swelling in your legs, ankles, and feet.
- Reduced ability to exercise.
- Persistent cough or wheezing.
- Very rapid weight gain from fluid retention.
- Difficulty concentrating or decreased alertness.
The Pump Function.
For the pump function of the heart, the specialists also have another term for it. They call it the Ejection Fraction. Or EF. The higher the percentage, the better the heart is working.
Sometimes, they divided it into 4 groups. Just to give you some idea.
An EF of 55% to 70%
- Pumping Ability of the Heart: Normal.
- Level of Heart Failure/Effect on Pumping: Heart function may be normal.
An EF 40% to 54%
- Pumping Ability of the Heart: Slightly below normal.
- Level of Heart Failure/Effect on Pumping: Less blood is available so less blood is ejected from the heart chambers. There is a lower-than-normal amount of oxygen-rich blood available to the rest of the body. You may not have symptoms.
An EF 35% to 39%
- Pumping Ability of the Heart: Moderately below normal.
- Level of Heart Failure/Effect on Pumping: Mild heart failure with reduced EF.
An EF Less than 35%
- Pumping Ability of the Heart: Severely below normal.
- Level of Heart Failure/Effect on Pumping: Moderate-to-severe HF-rEF. Severe HF-rEF increases the risk of life-threatening heartbeats and cardiac dyssynchrony/desynchronization (right and left heart chambers do not pump in unison).
For a normal heart, the EF is around 60%. In my case, when it was discovered, the EF was 15%
In The Beginning.
As I mentioned, for me, it was discovered during a regular heart checkup. During this, they make an echo of the heart and check also the flow of the blood through the heart.
When my specialist checked the echo, he found that I had heart failure. Normally it can take a few weeks before you will hear the result of your checkup. But for me, he already called me within one week.
Maybe you are wondering, did I not notice anything? To be honest, when I look back on it, I did notice something. I noticed that one or two months before the checkup, that I was tired quicker than normal. At first, you just think that maybe you have no physical condition. Only after I heard that I have heart failure, you can connect the dots.
After talking with the specialist about what was discovered, then the whole circus starts. You need to undergo several tests. Mainly to see if they can find out why you have heart failure and how severe it is.
At first, my specialist thought that it could be caused by a heart attack. One that went unnoticed. By doing several tests, they can look for some signs of a heart attack. But this was not the case. Until now, it is not clear how or why I have heart failure. One thing could be, that it was caused by my pacemaker. The specialist told me, that for people that have a pacemaker, after many years it is possible to get heart failure. But in my case, it was too quick.
My specialist also had tried to explain what it is and how this would affect my life. Mainly, what things I should not do or prevent. And my list of medications was changed.
Do’s and Don’ts.
To be honest, the list of don’ts is longer than the list of do’s
Don’t drink too much liquid. I was limited to a liquid intake of 1.5 to 2L per day. This includes everything that is a liquid. Yogurt, soup, fruits, tea, ice cream, and water.
Use less salt. Not salt less, but less salt. This is somewhat difficult. You always use salt to bring some taste to things, and now you need to lessen it. It is not easy because things taste different. One thing to compensate for the less salt is using different kinds of spices. And after some time, you get used to it. Now I notice it very quickly if there is more salt in the food than what I am used to. Especially if you eat somewhere else. It also meant, that we now check all the labels of all the products we buy. Just to see what the salt contents are.
The advice was also that I need to try to walk every day, maybe two or three times a day, for at least 15 minutes. Just to get some exercise. And during this, listen to my body. Not only for walking but all the other things too. When my body signals that it is tired, I need to stop and rest. If I don’t do this, after a few minutes I will get nauseous and it will take a long time before that is gone.
Also, every morning, I need to check my weight. If I notice that within 2 days, I had gained 2–3 kilo’s, I need to take some pee medication. It is a sign, that the body is retaining liquid/water. This can be, because you had eaten too much salt, or had drunk too much. Because of heart failure, your body has problems getting the water out of your body.
March 2013, I got a pacemaker. This was because my heart needed support. My heart did not get up to speed and was not able to raise the heartbeat when needed.
Now because of the heart failure, my specialist advised giving the pacemaker an upgrade. At first, the pacemaker was a support to the heart. But with the upgrade, it also could keep an eye on the heart. And if it suddenly would stop, it would be able to give it a shock to get it working again. It is some kind of backup, in case it is needed.
This upgrade also had given me some kind of peace of mind. It is almost like you carrying around your own guardian angel. Someone that keeps watch over you. It is also looking after heart rhythm disturbance. If it detected that it is out of sync/rhythm, it can try to correct it.
So on November 18, 2018, I got a new pacemaker. The difference with the first one is, that it is a little bit bigger and thicker. And this new pacemaker also had more settings that they could change. To get it to work optimally, I also got an optimization echo. With this, they make sure, that both heart chambers are in sync in the best possible way. In my case, the optimization was minimal.
Any Progress Made?
From the end of 2018 until the beginning of 2021, some progress was made.
When heart failure was discovered, my EF was 15%. But with different medications, and raising the dosage slowly, and with the upgraded pacemaker, my EF is now 25–30%
But this didn’t mean that I feel better now. I am still tired quickly. I still need to watch my water/liquid intake. Still using less salt. Still need to take all my medication.
The last heart checkup I had, was on February 4, 2021. Then they found out that my EF was 25–30%. The specialist was happy with that result. But I had mentioned to him, that I am out of energy in the afternoon. After checking my blood results from some time ago, he asked if I already had my iron drip. This was not the case yet. He went after it and within a week I had an appointment for that. We hope that this would give me more energy during the day.
Then he suggested also adding one more new medication to my list. Because he thought that there is a change to gain more out of it. He informed me that it was discovered by accident, that a medication that is used by people with diabetics, also has a positive effect on people with heart failure.
It will be until the next checkup, before we know if there was more progress made, or not.
As part of the maintenance and to keep the heart failure under control, I have a whole list of medications that I am using.
In total, I have 15 different kinds of medication. From that, I use 13 of them, every day. The rest is only for when needed.
It’s a medication mainly for the heart, but also some for my kidney.
The medication for the heart is to regulate the heartbeat, to lower the blood pressure, and also to keep the heart failure stable or slowly improve it. But also it is to try to relieve the heart of “hard work”. So it can relax a little and maybe slowly recover a little bit.
The rest is for the cholesterol, vitamines and to help the kidney. And for the kidney, I still have one more appointment and most probably, I will get one more medication, to reduce the growth of a new kidney stone.
A downside of all these medications and heart failure is that you are more susceptible to any virus. Like for example a normal cold. When there is someone nearby me with a cold, you can bet on it, that within a very short time, I also have it.
Now during this COVID-19 pandemic, I am very careful. Also, the people around me are careful. Before this pandemic, we went everywhere. But now, I rather stay home and be “safe”. Due to my heart failure, I also belong to the high-risk group. And I need to be extra careful. It’s not nice, but it is for me best.
Heart failure, for me, can sometimes cause some frustration.
As mentioned earlier in the list of symptoms, you can have difficulty concentrating or decreased alertness. And that in combination with the hemorrhage I had, can lead to frustrations.
I am not as sharp as I was before. Now sometimes things take time before there is a click or before it makes sense. Sometimes I need to let it sink in for a few hours. Or think it over. Sometimes people say something and maybe an hour later it is registered.
For example. A few days ago, I was busy making a database for keeping track of my medication and the times when I need to take what. I also wanted to keep track of what I have in stock. I have an app for that, but it was missing something and the alarm is not always going. While I was thinking over something on how to construct it or how to think of a formula, I had a big problem getting it together. For somehow I could not “connect the dots”. After a few minutes, I got frustrated. I could not get over the fact, that I could not figure out something.
My concentration is also low. I get distracted very easy and sometimes I forgot what I was doing or what I wanted to do.
Also, I noticed, that sometimes I have problems with getting the right words out of my mouth. I know what I want to say, but it comes out wrong. Or I stumble over some words and it will take me a few tries to get it out correctly. I had read about this from other people but never thought that I would have the same experience.
Like a "Bad" Battery.
One way of explaining how it feels to have Heart Failure is to compare it with a "bad" battery. Maybe a strange thing to compare it with, but I will try it.
With a normal rechargeable battery, once it is empty or almost empty, you can just charge it again. Maybe this can take one hour. But after that, you can use it again without any problem. Until it is empty again.
When you have a "bad" rechargeable battery, it will take longer before it is charged and it is discharged quicker.
With Heart Failure, it's almost the same. Your "battery" is discharged quicker. It also takes longer before you are able to continue again. In my case say that I am walking. A slow walk is okay, as long as it is not too long. Like one hour of non-stop walking. If it is longer or quicker, I will notice that I am getting tired quickly. As soon as I feel this, I need to take a rest. If I don't do this, I will start to feel sick. Like throwing-up. For me, it is a sign that I went too far. Once I rest, it takes much longer before I am able to continue again.
Or lifting heavy things. I can do it, but not for long. If I go too far, it takes really long before I have caught my breath again and I am able to do anything else.
Another sample is walking and talking. Just walking or just talking, is okay. But if I need to do both, only after a few words, then I am already out of breath.
So, I can still do many things, but I am limited and need to keep that in mind all the time.
It is good to have people around you, that are aware of your situation. That can help you. They can listen to you when needed. Support is important. And sometimes it is good, that others tell you to slow down. Even if you think it is not needed. That can also be hard or difficult to accept.
Normally, we people, want to do everything on our own. We like to prove to the people around us, that we can handle it and that we are strong enough.
For me, it is and was the same. I thought that I am strong enough to do it all by myself. And as I mentioned, it is hard or difficult to accept or ask for help or support. While deep in our hearts, we know that we need support or help.
But don’t forget, that while we “suffer” the people around us, also suffer.
I am fortunate, that I am part of a church family. And during our small group meetings, we can share our feelings and thoughts.
Heart failure. At first, you are only busy trying to figure out what it is and how it will affect your life.
You are also busy with all the tests and getting used to the new situation. Only after that, you can find the time to see if you can figure out what it is.
Over time, I had read more about it and slowly things sink in. When you read the first things, you find out that it is a chronic disease. It is something that cannot be cured. The only thing they can do about it is to prolong it. Trying to make the life expectancy longer.
I was shocked to see that the life expectancy for people with heart failure, was 5 to 10 years. But over time, things had changed. With all the current medications and treatments, this is now much much longer.
It can be frustrating at times. It can be a struggle in accepting it. And sometimes it can be confronting. But we are doing our best.
For me, it is now around 3 years ago since it was discovered. And now and then, I still have difficulty with it. For example, when I had the idea to write about it, I did some research. And every time I was confronted with the fact that it is a chronic disease. It is something that will never be cured. But I have faith and trust in the current knowledge about this.
Is There Maybe Some Advice That I Can Give?
Maybe. One thing for sure, make sure you are well informed. Ask as many questions as possible. Maybe also join support groups. Talk about it with others. And of course, don’t give up. But be ready for some setbacks. That is normal.