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Fri, Jun 26 11:27am · CURRENT "LIVE" HCMA Patient Focused Drug Development Meeting in Hypertrophic Cardiomyopathy (HCM)

Join the discussion with industry, FDA officials, patients and care providers at http://www.4hcm.org/pfdd It's important your voice be heard — symptoms, challenges, medications, surgeries, treatments that work, what doesn't. Important chance to speak to hundreds about HCM and its impact on your life, family, and future.

Mon, Jun 15 3:58pm · Heart Disease: Let’s Talk About the Emotional Side in Heart & Blood Health

Very kind of you and totally on point. Thanks for the boost and kind words. Yes, each day is a gift!!

Mon, Jun 15 3:56pm · Heart Disease: Let’s Talk About the Emotional Side in Heart & Blood Health

Thank you Donna. What a kind response. Over the years, I've struggled to let go of some of the anger and disappointment that happened so long ago. Providers didn't know what they know today. But each day is a gift and I find myself fortunate to live a rewarding life!

Mon, Jun 15 1:33pm · Heart Disease: Let’s Talk About the Emotional Side in Heart & Blood Health

The emotional side of HCM has been difficult at times. When I was a young woman, I was told not to have children and this was devastating to me and left me unable to understand the ramifications for marriage, etc. The man I was dating at the time I never saw again, he said, "I can't marry an invalid." That was 40 years ago. But the memory haunts me not because it interferes with my life now, but it was cruel and harsh when I was young and had no idea how long I would live. Knowing I will never go to the doctor and have a complete good bill of health is overwhelming at times. The erratic complications — palpitations, fatigue, atrial fibrillation, shortness of breath — crop up when you dread being held back for any reason. People react can be cautious and scared to be around you. So it takes telling yourself a story of strength and courage and being your own best friend. Finding ways to combat the loneliness and isolation that comes with the disease.

Mar 26, 2018 · Woozy feeling in Hypertrophic Cardiomyopathy (HCM)

Glad you feel less woozy. I’ve been in Verapimil at least 20 years. Started on 120 mg and bumped to 240 mg in my early 50s. I’ve tolerated it well but recall feeling woozy and disoriented for a few weeks when I made the shift. I run a low BP and doctor monitored me closely until body caught up. Hope you get some answers.

Mar 20, 2018 · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

@ronaldpetrovich please see my note in this thread about coming to Mayo.

Mar 20, 2018 · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

@tkterrell just a note of reassurance. I’m 62 and had symptoms in third grade when i was 8 years old and kept getting short of breath on the playground. You will learn to adjust, your body will support you and there are treatment options being tested and developed all the time. I self-referred myself to Mayo in Rochester. 10 years ago became they specialize in HCM diagnosis and treatment. I go every few years to monitor the status of my condition. Good luck. Let me know if I can be a sounding board for you. I is shocking and scary at first and seeing that others live a normal life will help. Gwen

Mar 20, 2018 · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

Hi Ronald. I have HCM, diagnosed 30 years ago, symptoms started as a child but no one knew what was wrong. I’m coming to Mayo Rochester April 2-5. I’d enjoy a chance to meet you and hear about your experience. I’m also a writer and want to get more involved on social media. I have open time on Wednesday April 4 for lunch or available all afternoon. Could we meet? Thanks Gwen