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New Diagnosis Of HCM
Hello everyone,
I’m new to the group. My husband was diagnosed with hypertrophic cardiomyopathy (HCM) after his cardiologist detected a murmur during his routine yearly visit. He has a history of peripheral vascular disease (PVD) in both lower extremities, for which he underwent revascularization with nine stents in 2020. He has been doing surprisingly well since then, with good blood flow and no further blockages.
Following the discovery of the murmur, an ultrasound of his heart was performed, and the cardiologist recommended a follow-up MRI. The MRI revealed some thickening of the ventricular walls, along with near akinesis of the basal inferior wall. However, his ejection fractions were within normal limits. There is some aortic stenosis present, but no left ventricular outflow tract (LVOT) obstruction.
Importantly, he is currently asymptomatic. We received a call from his cardiologist informing us that the MRI results looked good. Our follow-up visit is scheduled for next week.
All in all this information has been very helpful with my anxiety. I am a retired nurse and understand what we may be facing.
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HugInterested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.
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I have HOCM, a murmur and a leaky valve. The HOCM is treated with Camzyos 5 mg one a day which is working great. My septum basal diameter is now 1.4 cm (it was 2.2 cm 6 months ago). I no longer have angina. I take Echocardiogram tests every 3 months for now. The Echocardiogram or MRI always helps to monitor the progress of my HCOM.
Luckily, he has no obstructive HCM. His Septum Basel is 1.5cm. So, it seems to me that we are in the early stages. We will know more about the possible treatments when we have his appointment next week.
Hi Rhonda @wifeofhcm13 , and welcome to Mayo Clinic Connect! I'm glad you found this online community.
And thank goodness you are a nurse with all your background. You will be a terrific advocate for your husband.
May I ask if you have children? And if so, have you done genetic testing? Most all HCM is congenital and is passed on from a relative. Even if you have no children, your husbands siblings, if he has them should be tested too.
It sounds like good news regarding no LVOT obstruction, so big sigh.
I had open heart surgery at the Mayo Clinic when I was 62. HOCM and HCM sneak up on us sometimes because we may not have symptoms, or are diagnosed with some other heart conditions until like your husband, it is confirmed conclusively with MRI.
I hope you come back and let us know the results of your visit next week.
Do you have a list of questions to ask the cardiologist?
Is he/or she up-to-date on all things HCM?
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2 ReactionsI am aware of the genetic factors related to hypertrophic cardiomyopathy (HCM). This is my husband’s second marriage, and he has two sons from his previous marriage. I have concerns that his oldest son may carry the gene as well. Currently, we have not initiated genetic testing, as we are still in the preliminary stages of this process.
In preparation for our next steps, I have compiled a list of relevant information. After experiencing the initial shock and confusion, I took the time to conduct thorough research, which has been reassuring. I am grateful that we discovered this condition early. If it had not been for my husband's diagnosis of peripheral vascular disease with stenosis—along with my insistence on maintaining routine cardiology appointments—this situation may not have been identified. The heart murmur was only detected this past July, and I consider it fortunate that his cardiologist was able to recognize it.
What’s up, Doc…
I just heard the news myself last week. But I have to say the meeting with my cardiologist wasn’t too bad. There was even some good news, I may be coming your way down to the Mayo Clinic. As expected, he confirmed a diagnosis of HOCM with an apical aneurysm at the tip of my heart. From what I understand, it means I have a bulge in the muscle wall, not a vein. He started me on medication and is referring me to your clinic at the Mayo. Of course, I hope Mayo will find I’m a good fit for their program. Depending on how the medication works, a pacemaker or even heart surgery could be in the works—but I think that’s a way off.
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1 ReactionHello there @bvz1964, and a warm welcome to Mayo Clinic Connect. I'm glad you found this online community of fellow HOCM/HCM patients.
You sound like you have a positive attitude. That will help you so much in the long run as you learn and deal with what you have just been diagnosed with.
Great news that you have been referred to the Mayo Clinic. I am partial, but I also know that the Mayo Clinic is the world leader in HOCM/HCM and the treatment or surgery for it. You will hopefully be in good hands soon.
The referral process is different for each person. For me it was only a few weeks before I heard from them and a couple of months before an appointment.
As you prepare for all this, do you have questions written down you want to ask?
Are you otherwise healthy and active?
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1 ReactionHi bvz1964. I'm not a doc, but if your doc is referring you to a Center of Excellence like the Mayo you no doubt are, and will be, in good hands. I became symptomatic with HOCM (my symptoms = undue shortness of breath, pressure in chest, tiredness) in June, at age 72, after being diagnosed with HCM 6 or 8 years earlier from test results (echocardiograms and MRIs), and I have been doggedly self-educating these last 6 months. Good for you for happening upon this site.
I also highly recommend the HCMA (Hypertrophic Cardiomyopathy Association), a patient education and advocacy group whose url is < https://4hcm.org/>, for a wealth of information from people who in many cases have personally "been there, done that," like you and I are just starting to do.
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1 ReactionHi @manuelpo - I have about the same as you describe above with a current diameter of 2 cm. Can you tell me if you have had any side effects from the Camzyos and how long you have been on it? Thanks!
Hi @joycehocm - The first few days very light dizziness mostly when I woke up at night to go to the bathroom, but that could also be related to a prostate medicine I take that causes some dizziness. I was very careful when I walked. After the very first few days, I put in my mind that I will be ok and not worry about it and all has been great since then. I have been on Camzyos since last end of March 2024 and I have a long way to keep taking it. I have no longer angina or any dizziness anymore. I hope this helps and you get better soon.
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