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New to group. Pending appt with cardiologist
I started having high blood pressure in May 2025. It is odd because I have had low to normal blood pressures. I have noticed symptoms like shakiness/trembling, which I thought oh.. it is stress. I had exercise induced asthma for years.. but now it seems walking up a flight of stairs makes me exhausted. I even break out in a sweat ( I wrote it off as anxiety) or menopause. But 9 months after the echocardogram was ordered, I finally had it. (My primary care doctor canceled 1st order and entered order again - next day I had it. Doctor writes back that left lower ventricle is smaller than normal and there is an obstruction because of thickend walls. All this to say- they scheduled appointments with Cardiologist but not until Feb. 12. Instructed to go to ED for SOB, Dizziness, fainting or chest pain. While not total fainting.. I do sometimes get tunnel vision or black spots. All that to ask, is it normal to have to wait so long with abnormal echo?
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Definitely sounds like HOCM and you need to be seen by a Cartiologist much sooner than February. Hopefully you will receive Alcohol Septal Ablation.
Hi @pherrick , and welcome to the group. You'll find lots of folks here who have experiences similar to yours but (probably) few of us are doctors. Take what you find here and do your homework ("research"), but trust your medical experts. If you find you are getting medical advise you don't believe, get a second opinion for sure. Do you have HOCM? Quite possibly, but if you are like most of us, HOCM doesn't mean you are going to drop dead from it tomorrow. I had to track it down over more than 16 years before I finally got diagnosed with obstructive HCM; I had all of the symptoms you mentioned plus a bunch more. Waiting 6 weeks for a cardiologist probably feels like a lifetime, but where I live, that's not unusual. Once you get to the cardiologist, it will still take time before things get under control again. Does that mean ablation? Surgery? Meds? Take time to read up here and on other *credible* web sites. Make a list of questions for the cardiologist (most of us forget all of our questions the instant we go through that door). Be gentle with your self while you wait. Sunday afternoon full contact football with your friends is probably out. Walking your dog? Betcha! Your best friend will be patience and calm in the meantime. Pray, meditate, do yoga, walk your dog - whatever keeps you calm, centered and as stress-free as you can manage. Good luck wherever your path takes you on this journey. You are not alone.
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5 ReactionsEverything for me has been a wait. As this is our medical system in the US
Check out HCM Beyond the Heart website. Lots of information about hcm
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1 ReactionThe waiting to get into your appointment is frustrating. Whether it's the USA or another country with universal medical care, there are not enough medical people to treat all who need help. We do not want to be emergencies. If you are diagnosed with HCM or HOCM, please look at the Hypertrophic Cardiology Association website. https://www.4hcm.org/
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2 ReactionsThe heart department at Mayo is the #1 most busy department. Unfortunately, that means you have to wait in a long line, but you have an appointment, so use the time to study the aspects of what they have told you and write out your questions. As my doctor said “HOCM is probably not going to be the thing that kills you. Take care of your health and don’t over exert yourself.
”I went through a long process of doctor visits, medication, tests and finally open heart, myectomy surgery. I am thrilled with my result. Be patient and know that time will pass and you will most certainly get excellent advice and care. Good luck and good health to you!
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2 Reactions@dbruskin May I add that the Hypertrophic Cardiomyopathy Organization is another dependable place to get both information and help. https://www.4hcm.org/
Hello @pherrick, and welcome to Mayo Clinic Connect.
You've received some great advice from member @boatsforlife and @walkinggirl and others.
Were you officially diagnosed with HCM or HOCM?
Here is a link from the Mayo Clinic about Hypertrophic Cardiomyopathy:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Even though it's scary to learn that you may have this condition...if you do at least you know now!
Half the battle is won already!
For many of us with HCM and HOCM, we go misdiagnosed or undiagnosed for a long time, years even, and by the time we get to a place where HCM is a specialty, the condition has progressed.
But it makes sense now when putting all these whacky symptoms together.
In my case, two months sounds about right for being referred to a Center of Excellence (COE) or non-COE for that matter.
In the meantime, just try and live your normal life and let your body be your guide.
If you are tired, nap.
If you are short of breath, stop what you're doing and recover.
Stay hydrated.
If you get chest pain while exerting, stop and let the pain go away.
It's not a fun condition. I lived in fear I was going to die on some of my walks. And there were days I thought I would die.
No. It's not a fun condition at all.
But you are on your way to hopefully a solid diagnosis and a good treatment plan.
Learn as much as you can about HCM so you can be informed and help with your treatment.
You do not mention if the appointment you have scheduled in February is with a leading cardiologist in HCM or if it is at a Center of Excellence. It's very important they are well educated in this condition.
Do you know if it is?
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