Just Diagnosed with HCOM

Hello everyone and I am grateful to find this support group. I am 55 years old and very recently diagnosed to HCM. I am still going through testing. Pending tests are - cardiac stress test, cardiac MRI, Holter Monitor and genetic testing. My symptoms were shortness of breath and extreme tiredness. I also had diagnosed hypertension. I am currently on Losartan 50 mg and metropolol 25mg. My cardiologist wants us to complete all the testing first before we embark on available treatment. While my ProBNP was 10 times the normal, my ejection fraction is 70 at this time. No valvular disease was noted. I am nervous of course but I am encouraged by this group. Thank you in advance for any information you can share.

Hello everyone and I am grateful to find this support group. I am 55 years old and very recently diagnosed to HCM. I am still going through testing. Pending tests are - cardiac stress test, cardiac MRI, Holter Monitor and genetic testing. My symptoms were shortness of breath and extreme tiredness. I also had diagnosed hypertension. I am currently on Losartan 50 mg and metropolol 25mg. My cardiologist wants us to complete all the testing first before we embark on available treatment. While my ProBNP was 10 times the normal, my ejection fraction is 70 at this time. No valvular disease was noted. I am nervous of course but I am encouraged by this group. Thank you in advance for any information you can share.

Hello everyone and I am grateful to find this support group. I am 55 years old and very recently diagnosed to HCM. I am still going through testing. Pending tests are - cardiac stress test, cardiac MRI, Holter Monitor and genetic testing. My symptoms were shortness of breath and extreme tiredness. I also had diagnosed hypertension. I am currently on Losartan 50 mg and metropolol 25mg. My cardiologist wants us to complete all the testing first before we embark on available treatment. While my ProBNP was 10 times the normal, my ejection fraction is 70 at this time. No valvular disease was noted. I am nervous of course but I am encouraged by this group. Thank you in advance for any information you can share.

@fastar1 I have found great comfort and information on this blog, and I hope you do, too. I am curious if you have already had an ECHO since I didn't see that in your list of "to do's." I have mitral valve regurgitation and HCOM. (HCOM diagnosed at age 59) I noticed you were on Metoprolol which is what I am taking for Mitral Valve Regurgitation. (diagnosed at 50) It makes such a difference for me. I have been on Camzyos for two and a half years and it has changed my life. I can't imagine not being on it now. I mention this in case you are ever given the possibility of Camzyos as an answer for your HCM. I was a patient at University of Washington Heart Institute and am now at MAYO clinic Scottsdale. I have received excellent care and monitoring at both hospitals.

You mention you are nervous and that seems normal for issues with our hearts. I wanted to answer your blog post because there are options for those of us with HCM and I am proof that a new drug like Camzyos can be a great option. (personally I was very nervous about open heart surgery which I haven't had to consider yet) joy!

@fastar1

I do not know where you are at but your getting good test done and it's important to check your relatives since HOCM is hereditary. You have been having genetic test done which is good and you may fine other relatives who have HCM or HOCM. Your relatives need echocardiograms for diagnosis.
My first surgery was an alcohol septal ablation and I also had a right heart catheterization done as well.
Best to You
Jachrist

@jachrist Thank you so much for your reply. I am at the very beginning of the process and have done the echocardiogram which led to the diagnosis. I have a holter monitor, cardiac stress test and cardiac MRI scheduled. I also have genetic test scheduled. My sons will be tested after the results of my genetic testing. I am currently taking losartan and metoprolol. The long term treatment will be based on the outcomes of the testing. Thanks again!

Hello everyone and I am grateful to find this support group. I am 55 years old and very recently diagnosed to HCM. I am still going through testing. Pending tests are - cardiac stress test, cardiac MRI, Holter Monitor and genetic testing. My symptoms were shortness of breath and extreme tiredness. I also had diagnosed hypertension. I am currently on Losartan 50 mg and metropolol 25mg. My cardiologist wants us to complete all the testing first before we embark on available treatment. While my ProBNP was 10 times the normal, my ejection fraction is 70 at this time. No valvular disease was noted. I am nervous of course but I am encouraged by this group. Thank you in advance for any information you can share.

Hey @fastar1, welcome to Mayo Clinic Connect.
I am so glad you found this site and have been encouraged by what you have read.

You are on the right track with the testing you've done and the tests coming up.
This information will allow your provider to be able to make a plan with you on the best course of action for your HCM.
I read that you are very close to a Mayo Clinic.
May I ask if it is Rochester?
They are the experts in Hypertrophic Cardiomyopathy, and Dr. Ommen is a world leading physician in the science and education regarding this condition. He sets the protocol for others to follow.
If you have considered a second opinion, what a great place for you to be! I had to travel across the country to get there, but I would do it again in a heart beat (pun).

No two of us are alike, so each person will have different options available for the treatment of HCM. And since we are all different, we will process that information differently too.
You get to decide what is best for you, physically and emotionally. HCM is tough to handle when you are first diagnosed. But it is good to know what you have and be able to learn as much as you can so you can help decide your treatment too.

Here is a link to Mayo Clinic and Hypertrophic Cardiomyopathy:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
In case you have not read up on what you have, take some time and learn as much as you can so you can be your own best advocate. Not all cardiologist are specialized in the progression or treatment of HCM to it's unfriendly obstructive component HOCM.
It can happen slowly, over much time...or progress rather quickly. You know you better than anyone, so pay attention to your symptoms and keep good notes.
I hope you come back and share your MRI and other test results with our little group.
When do you have the rest of these tests scheduled?

@fastar1
Best to You
Your on the right tack
Jachrist

@karukgirl Thank you so much for the warm welcome. I have read the information on HCM on the Mayo Clinic website. And yes, I will share my test results as soon as I get them. My tests are scheduled through February and March with the last one - Cardiac MRI - in April. I will ask my cardiologist if he specializes in treating HCM. I was referencing the Massachusetts General Hospital because they have affiliations with the Mayo Clinic and I live close to MGH. That said, if I need to fly to Rochesta MN - I will. I am very encouraged by you all - thank you!