Hitting a wall with my HCM care

Are you being treated at an HCM clinic at a Center of Excellence. If not and one is within travel distance, perhaps you should try to see a cardiologist at such a center as the cardiologists at these HCM clinics see a large volume of patients and are far more experienced with how to treat HCM patients.

No , unfortunately I’m being treated (as a civilian) at a military hospital . And that’s not to say treatment at our facilities is by any means poor I just don’t feel like in this case I’m being treated right and wanted some insight from others who have experience. My options right now are bringing my concerns to light and requesting a second opinion and then from there I can potentially tell them I would like to be sent off post to a civilian provider in which case I would need to research the best cardiologist for my area who has more experience in this field. And I am not opposed to that at all because I have had great experiences with civilian providers .

You might also check out the Hypertrophic Cardiomyopathy Association online. They provide great information and if you join you will have an intake phone call and they can actually help you find a qualified HCM cardiologist close to you.

I would definitely reach out to the mayo for a second opinion. If not mayo try cleveland or any big teach hospital
Talk to the place ykur being treated and let them know you would like to seek a sexond opinion

I am treated at the HCM clinic at Mayo. A great place.

LOL my comment was for @awest8
Glad your treated at mayo

I would definitely reach out to the mayo for a second opinion. If not mayo try cleveland or any big teach hospital
Talk to the place ykur being treated and let them know you would like to seek a sexond opinion

Greetings @awest8 , and welcome to Mayo Clinic Connect.
I'm glad you found this site and I see you have already been posting with other members.

The more information you have, the better off you will be to advocate for yourself.
You have to be your own best advocate, especially when it comes to...well everything! But also for HCM and HOCM. Many cardiologists are becoming more familiar with HCM, but it is very important to find a cardiologist that is highly specialized in treating this weird condition.

Your symptoms are so familiar, and part of this condition. Being told that the plan is to "wait it out and see if something happens" sounds pretty cavalier in my opinion. Is your treating physician aware of the SCD (sudden cardiac death) aspect that HCM people have? Knowing how dangerous SCD is, like fatal, would make me want to know all I can about this so I can talk to my doctor with knowledge. Have you read up on HCM?
Here is a really good link from the Mayo:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Here is another link from the American Heart Association:https://www.heart.org/en/health-topics/cardiomyopathy/what-is-cardiomyopathy-in-adults/hypertrophic-cardiomyopathy

You mention you are treated at a military hospital with good care for the most part, but you don't feel like you are being treated right in this case. That sounds like your instincts telling you that you need a second opinion. Trust your instincts. This is your life, and you need to feel confident you are heard and treated with the best options available. Wait and see sounds like a poor option.

I do not know where you live, but if you are close to a COE (Center of Excellence) you owe it to yourself to request a second opinion. I actually had a second and third opinion. Cedars-Sinai and Mayo Clinic, Rochester. I did my research and these were top places in the country for HCM. Cleveland Clinic is as well, but I chose Mayo as my far away destination, it is across the country for me. I will never regret going to Rochester. I believe it saved my life. By the time I had my open heart surgery, my heart was enlarged and failing and I had no quality of life anymore. My local cardiologist misdiagnosed me for several years, and finally recommend me for surgery for something I did not have. I shudder to think what would have happened if I stayed home and had open heart surgery in my town for something I did not have. There is a lesson here for you!
It may be inconvenient to travel, but again, this is your life, and we only get one spin on the planet.
When is your next appointment? Have you made a list of questions to ask? Do you know what you want to know?

Thank you so much for your reply, this is all very helpful! I truly appreciate the insight here. It’s already such a big pill to swallow dealing with the diagnosis but it’s been made harder with running into the wall and feeling so unsure of where to go so I’m really thankful for this community’s help. I was able to find out my city does have a center of excellence so that’s something I can push for!! I will be asking for a second opinion for sure.

I am def going to be asking for a second opinion . Thanks to everyone’s replies here I feel a lot more secure in my gut telling me that’s what needs to happen and I’ve gotten some great advice which helped me locate a civilian facility I can push to be seen at which specializes in HCM care