In most cases where people become symptomatic, this growth creates an obstruction of the mitral valve making it hard for the already thickened heart muscle to pump blood from the heart. I also have congestive heart failure associated with this condition.
The symptoms of my disease have been noticeable since my 20’s. I fainted twice in high school and I couldn’t swim for any amount of time without being short of breath. There are four primary symptoms of HOCM: Shortness of breath, angina (chest pain), fainting , and palpitations or changes in the rhythm of the heart. It may feel like a rapid heartbeat, a skipped or extra heartbeat, or just an uncomfortable awareness of one’s heartbeat. Palpitations can be associated with sweating or lightheadedness.
Hypertrophic cardiomyopathy is not a curable disease. The primary goal of treatment is to relieve the symptoms and prevent sudden death by promoting heart relaxation, reducing the obstruction, and avoiding abnormal heart rhythms.
Because HOCM affects each person differently, there is no “typical patient” and no standard plan of treatment. Treatment is also different from other heart conditions. For instance, If a person with HOCM were to take nitroglycerin for chest pain, the symptoms could worsen and the nitroglycerin could even cause a deterioration in the person’s condition. Sudden death is common. I’m not allowed to do a lot of normal things.
The summer I was 49 I noticed that I was having a harder time with my normal routine. I thought that I was just out of shape, causing me to have severe shortness of breath. After many test I was finally diagnosed with this condition. Over the next year my condition had worsened to the point that it was now labeled as serious. I was generally able to still move around as long as there were no hills or many stairs. I worked at a job that allowed me to rest a lot of the time. I still had not let my symptoms of having serious heart problems show.
A few months later I began to notice that I was having a harder time walking around and my doctor became worried. Referred to a specialist At Emory Hospital in Atlanta, I was informed that my heart muscle had grown to the point that it was significantly blocking the outflow of blood in my heart. A few weeks later I had open heart surgery to remove a part of the muscle inside my heart. The surgery created 3rd degree heart block, meaning that I became pacemaker dependent.
The recovery was fast considering. I had more energy, and the only thing that held me back was the pain from having my chest cracked open. I started cardiac rehab after a month to help build my strength. I started to feel better, and I was loving it. I joined a gym, started taking dance classes and begin to get back to my normal weight.
Over the next month I went back to having shortness of breath, chest pain and strange heart rhythms. I felt I was walking down a road I had been down before. I was slowly losing the ability to breathe, I couldn’t walk more than a few feet without having chest pain, palpitations, and exhaustion. I could sleep all day every day.
At that time my cardiologist decided to implant an ICD (Internal Cardiac Defibrillator). Let me tell you, it is no fun getting shocked by that thing, but I know it is there to help me.
I am on a lot of medication to help make the symptoms as manageable as possible. My heart is still not functioning well, it is working way too hard. I was told I could no longer work which required my retiring from a job I had loved for years.
It is believed I inherited the disease from my father. He had many of the symptoms and died of cardiac problems. I also lost my oldest sister when she was 58. She never made it through heart surgery to correct a “mitral valve” problem. My cardiologist also believes she had the disease. My children and other siblings are checked each year by a Cardiologist because they have a 50/50 chance of having the disease. So far none of them have tested positive.
So, that’s my story. I was one of the lucky one’s. This disease is often misdiagnosed. In the above photo, I was featured in a campaign to raise awareness for the Hypertrophic Cardiomyopathy Association.
I have an awesome life. I try to make the most of each day and I’m thankful for each new day I am given. I do want people to understand this disease more. I hope by writing this I will help someone understand the symptoms and know if they need medical attention. I also want to let someone else with the disease know they are not alone.
What is your story?