Living With LVNC

  Today, July 17, I had my first cardiologist check up in a while. Before I get into that, I am going to explain what is wrong.
   I was born like everyone else. At about two weeks old, I was in congestive heart failure and I had a hole in my heart. Luckily, by one year old, it closed on its own. At age three, my mom took me in for a check up and I was diagnosed with spongiform cardio myopathy. So I grew up with this. Didn't really show any symptoms. At age nine, my cardiologist at the time changed my diagnosis to Dilated Spongiform Cardio Myopathy. That just means that it got bigger. THEN at age ten they believed I had another heart condition called Wolfe Parkinson White Syndrome. They did some itty bitty operation where they went into my heart to find the abnormality and couldn't find anything. So that was nixed. Shortly after that the name was changed to Left Ventricular Non Compaction Cardio Myopathy. It is very rare for me to get symptoms. I have only had two bad episodes this year so far. Like I said, I have grown up with this. With stress tests, heart monitors, echocardiograms, EKGs, restrictions, medications. It's just the norm for me.
   So todays appointment. We got on the road at 6 am. So I was exhausted. We get there and it is a short wait. No problem. We do the usual: vitals, weight, height, questions. Then we do the echocardiogram. I picked The Avengers to watch during and the shadow was so into it. It went normal but, as usual, the doctor focused on the spot where the hole was. After that, there was the EKG. Again normal. Well, normal for me. I have an extra unexplained delta wave. After that a team doctor came in and we talked about how I am running, MRIs, my surgery from April, and any episodes I have had. Then I went and did a stupid stress test.  I hate stress tests. They throw you on a treadmill connected to a bunch of wires, a blood pressure cuff, a finger thing, and a mask. This mask didn't go into my mouth, so it was sort of better. It made it hard to breathe though. When you're on the treadmill you start by walking with no incline and it goes up and faster every three minutes. The awkward in between run-fast walk always kills me. It's always when I have to stop. I believe if it went straight to running, I could do it, but it is in between and it sucks. After the test I went back to my room and MY doctor came in. He said I did awesome on my stress test! Yay! But he also said my heart isn't pumping as well. He increased my medications. He said that the worst case scenario for me (besides sudden death) is a clot in my heart. It is at a low risk though. They are going to schedule me for an MRI and a talk with genetics at my next year check up.
   In ways I feel very lucky. Mostly because I am not dead and I don't show symptoms very often. So yay for that! But it is really scary to think about how I could die suddenly. Any day. Any minute. It's just really creepy. Some people go through life with this disease showing no symptoms and live a longer life. Some people die quick. Others go through some suffering first. I would prefer the first, obviously. So we will see what this will bring!