I am a veteran of the anxiety wars. By the time I was 30, I realized that I tend to worry about things. As I took on progressively responsible positions in my career, I knew that the stress on my job would only increase over time. I also knew that worrying about things that either (1) I could not control or (2) were unlikely to happen could derail my ability to be decisive not only in my career but in the personal sector of my life.
I knew I had to get the worry gene under control or the impact of the ensuing anxiety would be disastrous. As I recall, I read several good books on techniques to manage the stress so that I did not begin to obsess over red herrings. I did really well for a number of years. But then heart failure came knocking on my door.
When it comes to managing heart failure, I think the concept of tolerance plays a significant role in how much success you will achieve. Bear in mind that the word tolerance has a number of definitions, and so there are a number of aspects of tolerance that will contribute to better management of your condition.
The first definition that the Merriam Webster Dictionary website provides is: the capacity to endure pain or hardship: endurance, fortitude and stamina. So this definition pertains to heart failure management in the following ways. First, it is a health condition that will cause you a lot of hardship in your life that will likely increase as time passes. Examples are shortness of breath, fatigue, confusion, strict diet and fluid restrictions, and anxiety. The best way I have found to handle these hardships is with a reality check. They aren’t going away absent a miracle cure. But if I am really vigilant with medication and good habits then my ability to endure this hardship increases. Or in other words, I learn how to tolerate the hardships better and they become less intimidating.
Many of the articles I read about heart conditions indicate that stress is not good for your heart. When I first learned I had heart failure, I was beginning to wind down from a very active and often stressful career. But despite a heart condition, I still had my doubts that stress was really that bad.
The challenges I faced that made me advance in my career were stressful, but I often credited the stress for making my adrenaline surge. I thought this had given me energy and inspiration to react quickly and find solutions. How could it be a bad thing if adrenaline enabled me to (1) solve a problem and (2) move into even more challenging positions because I had shown that I was resourceful and able to perform well under pressure?
I think I have a love hate relationship with my cardiac device known as a cardiac resynchronization therapy defibrillator (yes, that is a mouthful). I love it because it keeps my lazy little heart beating at a steady rate. Without it, I would have an incredibly low heart rate and be subject to intense bouts of dizziness and lethargy. In other words, I would be an uncharged Energizer Bunny.
But I also hate it because it also can function as a defibrillator. The plus side is that if it works as described, it will keep my heart from going into cardiac arrest. In other words, it will keep me from dying which right now is my ultimate goal. But it also scares me because I don’t know what I will feel when the defibrillator activates. Will it be painful? Will it be so bad that I will live in fear that it might activate again?
In the August 2018 Washingtonian Magazine, there is an excellent article with the title "Open Hearts". It is about two young patients who met while they were in the hospital for heart transplants and are now planning to get married. The article explains the trials they endured as a number of unexpected complications arose after their transplants. But they persevered and are alive and well and in love. What a great development in their story!
In reading about the young woman’s experience with heart failure, I realized that there are some similarities with my story: We both experienced intense fatigue that was a sign of the onset of heart failure. We both experienced an extremely low ejection fraction. We both share the same outstanding heart failure doctor. The last similarity probably keeps us sane and alive.
I suspect most people are familiar with the adage: Curiosity killed the cat. The website phrases.uk.org says a previous version “Care killed the cat” dates back to 1598. Care was apparently defined as worry or sorrow. The first use of the word “curiosity” was substituted in 1898. The free dictionary gives several meanings for the adage, such as inquisitiveness can be dangerous, especially when it extends to things one does not need to know about, and being curious can get you into trouble.
The expression is appropriately applied to people who are blatant busybodies, snooping into matters that are not their concern. But as the patient of a chronic illness, you have not just a right but an obligation to be curious. What do you need to know? Well, it would be helpful to know the symptoms of the condition. But you also need to gather and analyze other pertinent information such as: how the condition will impact you personally, how your doctors will treat it, and how you can manage your life and well-being going forward. Your curiosity will be a crucial companion, empowering your ability to make decisions and rule your life.
I recently had coffee with an old friend from my former life as a government employee. I was working with her approximately five or so years ago when I blacked out and fell off the treadmill. As I think I have mentioned in previous blog posts, at the time, I was in a state of constant exhaustion, and I sensed that my life was out of balance. I had almost no energy, and my outstanding memory had vanished into thin air.
This good friend, who also is retired now, indicated that the change in my memory and my situational awareness was striking. She said another colleague approached her, wanting to know “What’s wrong with Mel?” They shared examples of times I seemed to have forgotten things. As a manager in the office, I would ask them to perform certain tasks one way, and then I would do something that conflicted with my own instructions. Looking back with hindsight on a time that was very destructive for my health and well-being, I was not surprised when she told me this. But even though I knew something was “not quite right” at the time, the perception of others regarding my actions and my behavior might have been helpful. I had to stop myself from asking: “Why in God’s name didn’t you tell me that I was losing it!”
Before I started this heart journey, indeed for almost 30 years, I breezed through my life at the speed of light. Hyper and intense were words that were commonly used to describe me. Then I blacked out and fell off a treadmill and for the first time in my life, I was forced to slow down due to unsettling bouts of dizziness and shortness of breath. I just couldn’t keep up with my normal pace.
About four months after the initial treadmill fall, I received the first diagnosis in my life relating to a heart issue. I was told that I had Bradycardia. This did not mean that I had an addiction to the Brady Bunch television series. It meant that I had an abnormally slow heartbeat (which is defined as fewer than 60 beats per minute).
Now that I am a heart failure patient I must have a treadmill stress test each year. The name is appropriate because for some reason, this test always causes me a significant amount of anxiety.
I know you think I’m exaggerating. How bad can the test be? Well, since you’ve asked, my results have seemed to decline each year. So despite my commitment to exercise and a healthy diet, I seem to be taking a step backwards at least in the aspects measured by the test.
Before I started down the road of heart failure, I was guilty of the crime of taking things for granted. What does this mean? Well, the Cambridge English dictionary defines the term taking something for granted as: to never think about something because you believe it will always be available or stay exactly the same. In my case, I’m wondering if the definition should just be “to never think”.
No, I am not being too harsh with myself. Prior to my diagnosis of heart failure, I was rushing around so much that I just seemed to be on autopilot, and I never gave any deliberate thought to what I was doing. In the last few years, I have had to give up things that I really liked to do. I am not always thrilled with this result, but the world has not come to an end. I say this even though it is always in my mind that people with heart failure sometimes needs heart transplants.
Melanie discovered that she had heart failure in 2013. She spent the next 7 years learning how to live with the condition, and how to achieve balance and personal growth. Then in October 2020, she received a heart transplant. This blog is about her journey of the heart.