In my late teens I started noticing something odd. I was an active, healthy young man, but suddenly I would get winded very easily; even with the slightest bit of physical activity. I was little on the heavy side, so I attributed it to that and kept on pushing. When it didn’t go away, I figured that I should go see the doctor just to be sure. I was told that I had a heart murmur, which was described to me as an irregular heartbeat. The doctor didn’t seem to be too concerned, so I wasn’t either. I went back to my regular life with an irregular heartbeat – no big deal. In reality, it was a much bigger deal than simply an irregularity. One day, about 10 years later, I was on the treadmill as part of my normal workout routine and the next thing I remember, I was laying on the ground. I was told that I blacked out and my cardiologist recommended that we run tests to determine the cause. I still wasn’t really that concerned. I figured it was something minor; didn’t even think it was my heart. After some debate, my doctor in Dallas determined that I had what he thought was congestive heart failure. Me? At 28? No way, Jose. I needed another opinion.
After consulting with my mother, she suggested that I see a cardiologist in the Charlotte area. After extensive testing, the doctors gave me news that changed my world forever. I was diagnosed with Hyper-trophic cardio myopathy (HCM). “Hyper what??,” I thought. I was told that I would not only need to take a lot of medication for the rest of my life, but the doctor also suggested that a defibrillator be placed in my chest. No, way – I was young and in pretty good shape. Aren’t defibrillators for old people? I was actually so young that I didn’t even really know what a defibrillator was. Of course I didn’t want this device inserted into my body, but my mom and aunt convinced me that it was the best thing to do. I said yes and I am now living with defibrillator. Okay, I can admit that I was a bit scared at that point, but tried not to worry since they told me it was merely an extra precaution.
Now, it’s 2013 and my condition has worsened. I've spent much of the latter part of the year in and out of hospitals. A significant amount of excess muscle has formed around my heart and that excess has to be removed. Basically, my heart works way harder than a heart should have to in order to function. Like any overworked muscle, it’s larger than average. Not such a big deal if I was talking about a six pack of abs, but this is not what you want for your heart. So, a few weeks from now, I will undergo open heart surgery. Yep, I’m thirty-something and I’m having open heart surgery. No matter how many times I say it, it doesn't sound 100% real. At this juncture, it is necessary; not an option. The doctors say that my heart can’t function this way much longer and that it’s the only chance I have at living a normal life. I think they’re right. Not just because they are medical professionals, but because I know how I feel and I live with this every day. My chest is constantly tight and I have trouble breathing. Every day activities are exhausting and leave me worn out. Right after Thanksgiving I experienced my very first set of shocks from the defibrillator – the device that has been in my body for over a year. During that ONE day, the defibrillator was activated nine times! That means that NINE times it had to shock my heart back to a normal rhythm. Shock does not even begin to describe what I felt. Each defibrillator activation was intense, and left me nervous and scared. I’d never experienced this before and it kept happening over and over and over again. The doctors are telling me that while that’s the purpose of the device, it’s not supposed to happen that much because each time it happens, it puts additional strain on my already overworked heart. I know it’s time to take this to the next level – no matter how scary that is. Open heart surgery is my only fighting chance.
I’m scared and I feel alone. Not because I don’t have people by my side. I have lots of family and friends that have been with me every step of the way. I feel alone because despite how much they all care about me; they are unable to relate to how I feel. When I’m in the hospital’s cardiac unit no one is my age. There’s no one to talk to. I don’t know anyone else who has this condition that looks like me. I’m a young African American man with a defibrillator that was activated NINE times in a 24 hour period. How many people my age can say that? How many people can I talk to about how I feel? What do I do when this happens? What is a normal reaction? These are the questions I often ask myself. No one should feel this void; this loneliness. There have to be other young people with the same or similar conditions who are living life like I am.
I am reaching out to you in hopes that you will support me as I undergo this procedure. I am asking for all of your prayers and encouraging words. Also, I am asking if you could donate to my surgery fund as we all know, the cost of healthcare is far from cheap. To my surprise, my insurance will likely only pay for a small part of the procedure, leaving the rest up to me. Not to mention my post-surgery expenses including home healthcare, medications and not to mention the routine cost of living expenses. Anything that you can give is greatly appreciated.
After my recovery, it is my plan to start a non-profit to:
1. Spread the word about the condition and make people more knowledgeable
2. Support and inspire those who may be living with similar conditions who feel as though they are alone.
I want you all to know I am in excellent spirits, as I know from whom my strength comes from. After this surgery I assure you that I will be back to the same Jeff that you all have come to know and love. Thank you again from the bottom of my heart and Happy New Year to you and yours!
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