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).
What did it mean to have an abnormally slow heart beat? It meant that the chambers of my heart were not contracting often enough to supply sufficient blood. This in turn meant that my body was not getting enough oxygen and nutrients to function properly. No wonder I was blacking out and falling off exercise equipment! No wonder I was getting dizzy just sitting at my desk! I also was told that damage to my heart had occurred.
What is the solution when your heart beats too slow? Well a week after receiving this diagnosis, I went into the hospital to have a pacemaker implanted into the area of my collarbone. About 16 months later, my pacemaker was switched out for a device that has both a pacemaker and a defibrillator. The switchover occurred when my ejection fraction literally tanked, going all the way down to a 15 (reminder: normal is 55 to 70). The ejection fraction reduction may mean that the damage to my heart noted in 2013 had worsened. The defibrillator became necessary because I was found to be at risk for the type of irregular heartbeats that could cause cardiac arrest. If that ever occurs, my defibrillator will shock my heart to return to a normal heart beat. Happily, that has never happened. But while the defibrillator has been idle, the pacemaker continues to work throughout each and every day.
My device is made by Boston Scientific. Here is a description of what the pacemaker portion of the device does: “Your pacemaker device contains a small battery-operated computer, which is typically implanted in your chest, and one or two leads, which are implanted in your heart and connected to the device. The pacemaker continuously monitors your heart rhythm and delivers electrical energy (as programmed by your physician) to pace your heart if it’s beating too slowly.”
At the annual pacemaker check, the technician powers down the pacemaker function for just a short while. It literally feels like someone unplugged my heart from the wall. I basically shut down in terms of energy. I shudder to think what life would be like if I had to function without a pacemaker to keep my blood pumping regularly.
I often refer to myself as the energizer bunny, since my heart operates to some extent on battery power. But really, I’m not like the energizer bunny at all. The bunny keeps on going and going and going until the battery runs down. I have probably about 5 years of battery life left in my pacemaker. But it is just not possible for me to march around day in day out at the same speed and beating the same drum like I used to do in my former life. Today, I’d be exhausted!
What is the reason for my drop in energy? I would say that it has a lot to do with the damage to my heart which caused my heart failure to worsen. In other words, despite the fact that I have a device to make the heart beat regularly, the device cannot make up for the fact that the heart is weakened and does not pump effectively. I think that I also lack the ability to go at full speed because I have a leaky mitral valve, and am on some meds that lower blood pressure.
I mentioned to my medical team that I was feeling really really really tired after the Thanksgiving holiday. In fact, I think the incredible fatigue had been present for more than a month. So have I ever told you how great my medical team is? Not only is each member of the team talented and extraordinarily bright, they also listen very well and are empathetic. After listening to me and looking at the record of low blood pressure readings, they recommended switching to a new beta blocker at a lower dose.
I was so excited and immediately agreed to the change. It gave me hope that my energy would return. It appears to me that the blood pressure is starting to rise. The change isn’t as fast as I would like, but then again, no one in my life has ever commented on how patient I am. In fact, nothing is ever going to be fast enough for me. But what I have noted happily is that I seem to have more energy, and I don’t seem as anxious about things that are inconsequential. I have a good feeling about this.
But even if the blood pressure rises and some energy returns, I have to be realistic. My heart was damaged and I can’t keep up at the level and pace that I maintained 5 years ago. I have to be careful not to set myself up to be ambushed by the heart related energy zappers: dizziness, fatigue, shortness of breath. This means that despite the fact that I still think of myself in some ways as a superhero, my energy level will never ever again allow me to run around at the speed of light. Rest assured, if you see me running around and looking like I have returned to the old Melanie, I can almost guarantee you that I will pay for it later in the day, or maybe even a day or two days later. In fact if you ever see my running around like the old Melanie, I encourage you to jump in front of me and tell me to stop!!!!!
Perhaps this sounds like an exaggeration. But one of my nurses reminded me that I have a significant cardiomyopathy. And that was a good reminder! I have witnessed firsthand too many times the bad reaction I have when I greatly exceed a sane energy output for a heart failure patient. The first few times this happened to me, I thought my condition was worsening. Then I found some blogs written by other heart failure patients. Here is an example of a typical account of the fatigue impact: “Fatigue: Being tired is a way of life for us CHFers. You must learn to pace yourself so you don't give out halfway thorugh the day. Do not over-do it on a day when you feel good because the "fatigue hangover" will clobber you 2 or even 3 days later. It's not worth it, believe me.”
I can only say amen to that description. I also think the term "fatigue hangover" is very appropriate - and trust me, it isn't like the "love hangover" that Diana Ross used to sing about. It's really a draining feeling.
I found an article on the Penn Medicine website discussing side effects that hinder the heart failure patient. One of the most important things I found in the article was the recognition that because the heart failure patient is often laboring under prescription impacts and the consequences of an ineffective heart, it is important that their loved ones provide a supportive environment.
This is the case no matter how “good” the patient looks. Another quote from the Penn Medicine website illustrates this: “Often times, it is difficult for patients with heart failure and their loved ones because they may not look sick, but they feel very tired and weak”. Yes, looking good but feeling wiped out is a continual complaint that is voiced by heart failure patients.
So what is one to do? I haven't quite figured out how to pace myself yet. I'm working on it. What seems to be helpful is to try to plan things out in advance so I don't overload on any given day. As a long morning person and a 4 year heart failure patient, I can tell you that night activities are the hardest for me, and so I try to avoid them. Sometimes it can't be helped because there is an event I really want to attend. When that happens, I try to plan the next day so there is not something important planned for the next day in the morning, and I may sleep in a little later. It can be a challenging both from the planning perspective and because I fear that I am alienating friends who don't understand the fatigue hangover. But trust me, it's real.
Here is the bottom line for today’s post. When I talk about change of pace, what I mean is that it is critical for me to reinvent myself so I am no longer a flagrant Type A, but a calm, measured Type B who gets lots of restful ZZZs!
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.