HCM-ers: Introduce yourself or just say hi

Yes just found out this week. I have not started treatment yet.

Hi Colleen. I am a heart patient with a twenty year history of heart issues. I have had a heart attack, double bypass, have 11 stents and last summer had an aortic value replaced. On July 5, I visited my cardiologist and was told that my total cholesterol was 91 and triglycerides were 170 which is down from over 300. Then on July 10 out of the blue I had terrible heart pain that two nitros didn’t relieve. Bottom line I was diagnosed with bradycardia and some QT prolongation. I was put on Florinef .1 mg and Lexapro dose was cut in half to 10 mg. I am so frustrated because I have been so active in recent months and now this.

Hi @don69, and a warm welcome to Mayo Clinic Connect!
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
I do not know if you have had an opportunity to poke around here on Connect or not, but I have posted a link to the Camzyos support group. This is an amazing support group and you can learn a lot from them. I would highly recommend you reading some of the posts there.
@kelliw and @jaymaysea are two Camzyos troopers! I hope you read their stories.
I think anyone would be anxious about starting a new drug, so you are totally not alone. In fact, you are in the best company here on Connect. Check out the Camzyos link I sent.
Were you just recently diagnosed with HOCM (HCM with obstruction) or have you known and are now symptomatic enough for Camzyos?

From what I have read about this medication will help relax the muscles in your heart and help you to exercise and relieve symptoms such as shortness of breath. Stay away from grapefruit and its juice unless your doctor says you can take it. I wish you well on your journey to wellness.

I have been diagnosed with HCM. I have to start taking Camzyos. What can you tell me about this medicine? What are the Stats on this? My cardiologist has never prescribed this before. I am very nerves about this do you know of anyone who has taken this pill before

Hello @colleenyoung, thanks for asking about my cardiology appointment. It went well, except based on my recent symptoms, my doctor wants me to have an MRI to determine whether I have obstructive HCM, but I have a Boston Scientific defibrillator and determined I can't undergo an MRI. we've scheduled a stress-echo for next month to see if that can shed any light on the issue. Additionally, I hope to learn more about the diastolic function of my left ventricle as my last echo was indeterminate on that reading. I've been doing some research on the ApicalHCM and options for treatment and have been learning a lot. This venue is full of interesting and useful information. I'm so happy to have found you.

@metta, I add my welcome. I agree that being physically active is as good for one's mental health as for physical health.

How did your appointment go with the cardiologist last week?

Hi Wendy @wendykramer, and welcome to Mayo Clinic Connect. Have you had a chance to look around here on Connect? There is a lot of information on here from others who share your same diagnosis.
Since we are all so different it is hard to if HCM is the cause...some on here lose weight, some gain weight because they can't exercise.
I have posted a Mayo Clinic link to HCM, and if you have not read it before, you may find it interesting.
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Although bloating and weight gain can have so many culprits...diet for one, I don't see it listed, but that does not mean it is not because of HCM.
Have you mentioned your concerns to your doctor?
Are you healthy and active otherwise?
What are some of your questions and concerns?

My name is Wendy. Diagnosed September 2023 and am having lots of questions and concerns. Also have anxiety and depression. My biggest concern is bloating and weight gain.

Yes, I've read some of the stories and feel right at home.
I have a couple of things going on besides the HCM at this point...

I was taking beta blockers when first diagnosed with HCM and received my ICD, and have slowly weaned off of them over the years. Now I don't take any meds for my heart and am doing ok so far. No shocks. I see my cardiologist this afternoon for a checkup so we'll see what he says.

I am very active. I belong to a gym and usually attend 2 exercise classes a day and work with a personal trainer once a week. For both my physical and mental health.

Happy to be here to learn more and share experiences.