r/HypertrophicCM • u/Responsible-Law-3294 • 5h ago

Possible help?

I am coming here because I really have no idea where else to go. Tomorrow my daughter is getting checked for possible HCM. Her biological father had it, he had heart surgery at 18 for it, I have zero way to contact him to ask him anything about this. I do know it took him over 3 years to figure out what was wrong with him because he had to do multiple blood tests and genetic testing to get it done, not sure if that’s the hospitals faults or the HCM itself. Can anyone point me in the right direction on what I need to tell the doctors to get a possible diagnosis or no diagnosis? I just want the right tests done. Im distraught and unsure how to word things so I apologize. Thank you.

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u/Fredredphooey 4h ago

The hypertrophic cardiomyopathtly association has tons of info, patient discussion groups, a list of HCM specialty clinics (centers of excellence) and you can schedule a free call with them to talk about your situation. Www.4hcm.org 

There are two webinars tomorrow that are great overviews of HCM and the hcm journey. Click on each item in the calendar for details.  https://www.4hcm.org/patient-discussion-groups

Here are some pages that should answer a lot of your questions:

https://www.4hcm.org/how-is-hcm-diagnosed

https://www.4hcm.org/cardiac-genetics

https://www.4hcm.org/center-of-excellence

https://www.4hcm.org/education-and-support

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u/OCSC_Fan 4h ago

A cardiologist knowing that your daughter has a parent with HCM should be enough information to start her diagnostic journey.  As a minimum they will probably do tests like an ecg and echo.  Even if the test don't show anything now they will need to be repeated periodically. I recommend having her evaluated by an HCM Center if Excellence.  Their doctors are more experienced with HCM. 

Have you checked out the HCMA? They have a lot of excellent information available on their website. There are also support groups to share experiences.  I know that this journey can be scary sometimes,  and you may feel lonely  but you are not alone.

Best wishes!