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@kelliw

Good afternoon! I got back yesterday from my niece's graduation from TCU, in Fort Worth, Texas. I am beyond thrilled that I was fine on the airplanes, I was able to walk to breakfast, walk around the city for about 1.5 miles, and now problem parking in a neighborhood and walking to the graduation venue! Yippeee!!! No shortness of breath, gasping for air etc.! The dizziness is totally gone. The only thing that is happening is swelling of my ankles and feet. I showed my doctor at our follow-up to the Echocardiogram and he wasn't concerned. I don't have any other side effects. They only swell if I am sitting for long periods of time, and from flying. When I put them up and wake up in the morning, they are totally normal. Is anyone else experiencing this? I feel so good though! 🙂

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Replies to "Good afternoon! I got back yesterday from my niece's graduation from TCU, in Fort Worth, Texas...."

Look at you @kelliw ! Flying around the country, doing stuff like a 'normal' person! Yay! I know we have the same condition, but different pathways to living with it. I had open heart surgery. You are bravely trying a brand new drug, with what sounds like great success. Here's what I can tell you from my side: My feet still swell after a long car ride or sitting a long time. Nothing like before surgery, but still present off and on. Mostly gone in the morning too. I had the beginning of heart failure before surgery and the swelling was much more intense. I don't know if this helps you or not, but no matter what we do, either surgery to correct it permanently, or life long drug therapy to control it...it isn't going away. You know what I mean? We were born with it and there isn't a cure, only control of symptoms. So I am just assuming the ankle/feet swelling is part of having HCM. I don't know about you, but I'll take a bit of fat feet over gasping for air and chest pain/dizziness any day! But then again, because I'm no expert on anything, if your doctor who is monitoring you seems unconcerned, then maybe that's a good thing. Right? When is your next appointment? Have you kept some kind of notebook on your symptoms so you can share with you cardiologist next visit? Or jotted down on a calendar the days your feet swell and what you were doing? It might be useful information since this is all so new.