Hi, my name is Amanda and I have been living with a heart disease since "01". I think "Surviving" would be a more appropriate word in every sense though.
I remember the day I initially found out I was diagnosed. I remember because I was called to come into my doctors office, but my doctor was not there. The nurse brought me in the office phone and said my doctor wanted to speak with me. So as she left and shut the door. I put the phone to my ear and said "hello". Forgetting the apology for not being there, annoyed, I listened to what she had to say. She told me I had heart disease and they discovered it because of a murmur at the E.R., and the echo done shortly after. I asked if I could exercise more, or eat better foods, ANYTHING to make it better? She told me "no, nothing would make it better, and exercise would make it worse". I kept asking if there was anything that I could do, because I just couldn't wrap my brain around not having any control over this grave situation. She firmly told me "no", there isn't any cure for this disease at this time, and I would most likely die from it". That's when I just didn't hear much of anything else she had to say. I clicked the off button, and cried a little. I remembered I had to walk out in front of everyone, so I clenched my teeth to make myself stop crying.
I Walked out of that office not having anyone to turn to. I had my little girl and that was it. She was too young to even understand any of it. I wondered what would happen to her if I wasn't there and how long I actually had on this earth.
I had just had a miscarriage a month before that office visit, which brought on the whole mess. I believed I was going to die any minute, and it was so devastating to me.
As time passed, I had more doctors visits and more heart appointments. My heart skipping and making me feel dizzy was something that scared me to a point of panic attacks. Panic attacks in my definition is like loosing your whole family in a day, and staring a Kodiac bear down. You just can't get away from it!
The head cardiologist at the time took my case and told me I needed my head checked, and that it wasn't that bad. That made me feel worse and also question if I was okay to even function. So I started reading up about my heart disease as much as I could. I needed some control and peace of mind, and wasn't going to be labeled a nut case because some doctor wouldn't believe me. It was the only thing I could do.
I then moved to Mississippi where I followed up with care there. One day my heart was so out of rhythm after just washing the tires on the truck, that I went down to the main office and asked someone to take my pulse. When they took it, they wanted to call an ambulance. I didn't want to scare my daughter so I assured them my doctor was right down the street and Id go there and see her. So I put my daughter in the truck and drove to her office and waited not to long to see her. She took my vitals and said she would be right back. When she came in she told me she had just called a friend who is a cardiologist and he would help me. I asked if she had heard the 3rd and 4th gallops…she said she had, and my heart was beating way too fast. She assured me this cardiologist was a kind man and would see me that day but I might have to wait a bit. I got the address and left to see him. I was called back to the sonography room where a really sweet woman did the test. Back in the waiting room I was greeted by a very short little man but with a huge smile and welcome. He brought me back into a room and told me what was going on. He explained that my heart was beating so hard and so fast that the blood wasn't getting out like it should…he told me that he was going to give me a good medicine that should help my heart beat slower and help relieve the palpitations and fast heart rhythms. I left that office not feeling crazy, and not feeling worthless.
This medicine, I swear, made me feel like I could do anything again. I felt so much relief that I felt like I had been healed! I loved feeling that way again. I could breath without thinking about it, and I didn't have any palpitations whatsoever! But over time, as with any medication, I started having symptoms again. I moved back to Maine and requested a new doctor. This doctor was new to the practice and believed me unlike the one I had before even though they were from the same office. He did many different tests but still didn't think I had the dangerous type of arrhythmia and thought I would be okay. However, I could still feel every pvc and fast heart rhythm so I kept going back. He ordered a holter monitor and kept encouraging me to wear it. I hated wearing it, but one day as I was walking down the stairs to my car I felt the rhythm and pushed the button. I had 2 episodes of SVT and called them in. My doctor called me a couple hours later, told me he was wrong, that I did have the dangerous type and needed an AICD implant within the week. So, two days later I had my first device put in. I was scared and still didn't have support. My daughter was so scared and must of stayed up late that night because she came to visit me and fell asleep on my hospital recovery bed. It was a hard pill to swallow but knew I had needed it. Time went on and in 2005 I found out I was pregnant. The doctors wanted me to terminate my pregnancy because my heart wasn't doing that well. I refused and was assigned to three different doctors and labeled high risk. The upside was I got sonograph pictures every week of my sons progress, but I hated carrying my happy butt to the doctors every week. I was an emotional wreck and scared that I wouldn't make it, or my son wouldn't make it to term. During my 7th month my heart went into a dangerous heart rhythm, and my device almost went off. The doctors decided to deliver my son early. Scared, tired, and frustrated I wanted that too! So my son was born early and spent almost a month in the NICU. He did well and I was blessed to be able to make it through and have two healthy children. The doctors did say he had right sided hypertrophy, but redid the tests the next day and it was gone. That was a huge relief as well because the inherited gene from this heart disease is given a 50% chance of being passed down to our kids. After learning this past year that I have a rare form of HOCM with Mid-ventricular obstruction (MVO), I have increased my studying and tried to reach as many as I can. Did you know that more women die from heart disease each year, then all the cancers combined? For me, I decided to push myself forward, try and stay healthy and now here I still am 9 years after my son was born. I've had two replacement batteries since the first implant in "04" and a lead extraction and revision. I am a survivor even though I do not look sick! My main goal is to speak to as many people as I can about this silent heart condition that can be fatal, before it's too late. Educating yourself about your heart is the only control you have, but also living a healthy lifestyle with positive thinking helps so much too! Thank you for reading a bit about my journey with Hypertrophic Obstructive Cardiomyopathy and I hope this helps in some way.