Hitting a wall with my HCM care

Posted by awest8 @awest8, Mar 13 6:45pm

Hi all,
I’m new to the group but happy to be here since there are so many of you sharing along this journey and I’m hoping maybe someone can share some insight that might help me.

I have non obstructive hcm, it is severe though. My ef is good I want to say it was 50. My holter really didn’t show them much but I do experience palpitations. I have shortness of breath, chest pain, a ton of fatigue and reduced appetite. It’s actually hard to eat a lot because my heart rate goes up when I do and I get more pain.
I did a stress test and that showed I had some potential vascular issues happening via ekg so a cardiac ct was performed which then showed severely dialated left atrium, and a short but deep myocardial bridge in the mid lad. My cardiologist has said that my hcm isn’t causing my symptoms and that he isn’t concerned with the new ct finding either but I’m not convinced . How do I approach this? I have had genetic screening and my hcm is genetic as well. I’m being told essentially that we just wait it out until “something “ happens, and then they will treat me. Is this acceptable? Should I push this ?

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Debra, Volunteer Mentor | @karukgirl | Mar 16 12:11pm

In reply to @awest8 "Thank you so much for your reply, this is all very helpful! I truly appreciate the..." + (show)

I am so glad that Connect has been a good resource for you and has helped you by providing insight and experience.
HOCM/HCM is a tough one to take when you first find out you have it, and Connect can help because we all have 'been there'.
Has anyone else in your family been diagnosed with this condition? Or have you been genetically tested?
It's usually always genetic.
You have a 50/50 chance of giving to your children if you have any.

hocmgirl | @hocmgirl | Mar 24 4:45am

I had tge same experience in Texas. The cardiologist stated "when your mitral valve gets bad we will replace it". I like to be proactive to delay procedures. Mayo has been great!

brumasterj | @brumasterj | Mar 24 10:17am

Sorry to hear your situation!
Im not real familiar with non obstructive but do know on obstructive that diuretics can make symptoms worse!
So caffeine is a big one, eating big meals is another one that i was told sends signals for your veins and arteries to dialate to help digest! Alcohol is another! And of course certain medications that have diuretics can cause your symptoms!
Hope you get the right answers to help with your symptoms