Living With the Limitations of Dilated Cardiomyopathy
When I was diagnosed with dilated cardiomyopathy, I didn’t realize how much my life would change.
By now, many of you know my story, but bear with me as we travel down memory lane for those who don’t know.
This or That
Do you feel limited by your cardiomyopathy?
I thought minor lifestyle changes would suffice
I was diagnosed with dilated cardiomyopathy after suffering a stroke in 2014. When I got this diagnosis, my parents and I were shocked, and we thought minor changes to my lifestyle would suffice.
We couldn’t have been more wrong. Instead, it was a total life-changing event that would upend my whole life.
Exercise limitations
I didn’t think there would be that drastic of changes necessary. For example: exercising. When I was diagnosed, my doctors told me to stop exercising only because I was lifting heavy weights, doing a heavy amount of cardio, and on a strict diet. They wanted to see if my heart would heal itself with medication if I stopped working out and gave my body a break.
Depending on how serious your cardiomyopathy is, there may be limitations on how much you can exercise. Or, if you can exercise, then you likely have to battle fatigue. That is another thing that I didn’t count on in my cardiomyopathy journey.
Living with severe fatigue
Fatigue is something I didn’t understand when everyone else used to talk about it. The fatigue you feel when you have cardiomyopathy is on another level.
I remember walking a few steps and being so winded and so tired from walking from my bed to my dresser. We went to family members' birthday gatherings at an apple orchard, and I was so tired that I couldn’t even walk up a small incline.
A new medication regimen
A medication regimen was something that was hard for me at first because I had never been on a medication regimen before except for my exercise-induced asthma. A puff of albuterol could hardly even be considered a medication regimen.
It wasn’t that difficult at first; the only thing that was hard was remembering to take my evening blood-thinner pills. I was also limited in my vitamin K intake because it causes the blood to coagulate, which can impede the effectiveness of blood-thinning medication.1
Dietary limitations were not hard for me
Speaking of diet, people with cardiomyopathy are often limited in what they can eat. All cardiologists talk about eating a diet that is heart-healthy and low in sodium when you have heart disease. This part wasn’t hard for me because I typically ate a healthy diet before I was diagnosed. I chose an active lifestyle because I enjoyed it and also enjoyed being an athlete. If you are diagnosed with dilated cardiomyopathy, there are plenty of recipes that you can find online now that sync with the heart-healthy, low-sodium diet.
The biggest heartbreak of my life
I had always loved children from a young age and always knew that having my own family was in my future. So, when the doctors told me not to get pregnant, it was the biggest heartbreak of my life.
It wasn’t that I wasn’t fertile, but my heart was too weak to handle a pregnancy. My ejection fraction was only 10 to 15 percent when I was diagnosed. The doctors were scared that they may have had to terminate the pregnancy if I got pregnant.
I think this limitation may depend on how low your ejection fraction is, because a friend of mine had cardiomyopathy and got pregnant and safely had a baby boy. It is up to the doctor's discretion, but with mine, they could tell by the numbers.
Limiting alcohol consumption
Limitations also come into effect with cardiomyopathy when it comes to alcohol consumption. Alcohol isn’t good for the cardiovascular system and neither is overconsumption. It can lead to heart failure and even a specific type of cardiomyopathy called alcohol-induced cardiomyopathy.2
Take things 1 day at a time
There are several limitations you may have to live with alongside cardiomyopathy, but don't let that discourage you from living your life normally. My mom always said not to worry about the things you can’t do, but focus on the things that you can do. Just stay positive and take each day 1 day at a time.
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