Heart Failure Doesn't Mean I'm a Failure
Dealing with heart disease has had its challenges but I have managed to live with it. I always say there is life after heart disease, you just have to find your way. Learn the ups and downs, the ins and outs, and make it work for you.
The number one thing is to always listen to your body - it never tells you wrong. Let listening to your body become your best friend. The more you bond with your body, the more you are in tune with it and know exactly what it is saying. Sometimes you have to be your own advocate and help the doctors add to their doctor book because all patients are different.
My heart journey
It started with a heart murmur at the age of 12 that turned into hypertrophic cardiomyopathy by the age of 17. Hypertrophic cardiomyopathy is most often caused by abnormal genes in the heart muscle. These genes cause the walls of the heart chamber (left ventricle) to contract harder and become thicker than normal. The thickened walls become stiff. So I have been dealing with this for a long time.
When I turned 21, I went into 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. The hospital became my second home, I kept fluid on me the majority of the time, which kept me feeling bad almost every day. I was excited to have a day where I felt ok to just breathe.
The mental side of things
Having heart failure controlled my life in every way, I just learned to deal with it and made it work for me. I believe anyone can do this once you take control back. Being overwhelmed, depressed, anxious, or having any other mental health challenge is a part of the journey. I say it all the time, having any of those is okay, and it's a real issue that some people don’t take seriously because it's not cancer, heart disease, etc.
I lived with heart failure until I was transplanted in 2016. A typical doctor visit was an all-day process. At the time I lived in College Station and was driving to Houston, Texas. I would check-in for my labs, go to the 20th floor, wait to be called to get an echo that took about an hour, then I would go back into the waiting room to be called again for my EKG. They would then take me to the back and download my pacemaker to make sure everything was working properly. After all of that, it was finally time to see the doctor.
I would be so nervous because I didn’t know if it was going to be a good report or a bad report. Most of the time it was bad because at that time my body was changing and failing more and more. I was spirally down, being 21 and not understanding why I couldn't live my life as a normal young lady was a dark place for me. I just wanted to do what regular 21-year-old girls do without feeling weak, tired, and exhausted.
Breathing was challenging for me, to just walk from my room to the restroom felt like I ran a mile. Not really understanding what my disease was and the why’s to everything made me live a confused life. That's when my spiritual life kicked in because that's all I had to lean on and it guided me through everything I went through. I was able to rise above it and get in front of the thing I was letting control me. I decided that I had heart failure but I wasn’t going to be a failure in my life.
From that moment on I gained confidence in myself and dressed like I was every other girl - I wanted to look and feel like it was true. The more I did that, the more I found myself and became my own independent and unique woman.
Do you use exercise to help manage your heart failure?