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HCM with no options for medication for relief of symptoms
Hypertrophic Cardiomyopathy (HCM) | Last Active: Aug 28 7:46am | Replies (36)Comment receiving replies
I'm curious... did you used to be more physically active as far as cardio and strength training? Do you think it led to increased symptoms? How can you tell your disease has progressed in the two years since your diagnosis? Have your symptoms increased? Or have your echo cardiograms changed? Have your ECG's changed? What medicine have you tried? Do you feel more confident with your new cardiologist? Just trying to make sense of this disease, which I know expresses a bit differently in each of us. Thank you so much for sharing your experience with your HCM.
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Yes, I was more physically active and actually used to teach yoga. I was hiking in the Grand Canyon two years ago when I knew something was wrong. Difficulty breathing. Chest pains.
I received the diagnosis and was placed on a couple of different beta blockers that didn’t help. I am now on Lasix. Not sure it helps.
I can exercise mild-moderate, but sometime symptoms flair and I have to sit down while walking. Stairs are terrible.
I have a doctor at Emory and will begin a clinical trial for a new drug next week. She said I have no other options since I don’t have an obstruction. She said the disease is progressive and my echos and bloodwork will always be abnormal so I shouldn’t obsess over them. It’s just tough because sometimes I can be laying down and have symptoms. Also, she wants me to have sleep apnea test, but I’m not ready for all that yet.
Sometimes it’s a little depressing, so it’s nice to have others who understand.
Thanks for responding.