HCM-ers: Introduce yourself or just say hi

Thank you for the quick response and info. The cardiac center did a cardiac MRI and thats what got the cardiologist to get the HCM doc involved. Yes, I have started a list of questions. First one is how fast or slow could this progress??

Hello @chawks6893, it IS a lot to take in isn't it?

First, welcome to Mayo Clinic Connect's HCM group. I see that this is your first post.
Have you had time to read the numerous stories from numerous members like yourself?

One of the wonderful benefits of being here on Connect is finding out you are not alone. There are so many of us who were in your same place when first diagnosed.
Lost. Alone. Confused. In denial.

Like you, I had just about zero knowledge when I was first diagnosed...I could barely spell hypertrophic cardiomyopathy.
I was very active too.
Running and hiking, ballroom/swing dancing/riding motorcycles. Then things slowly started to change over about four or five years.
I kept being diagnosed with all these garden variety heart conditions...like small vessel disease (the cause of my chest pain) mitral valve prolapse (the cause of my PVCs) aortic stenosis (the cause of my shortness of breath) and the last one was a big doozy... Sub-aortic membrane (the real cause of all these). My cardiologist was actually going to schedule me for open heart surgery in my town, but he said what I had was very rare. So I questioned if it is so rare, how many has this surgeon done?
Sadly, I had none of these heart diseases, and thankfully I asked for referrals to outside COEs.
It took two outside consultations from two COEs (Centers of Excellence) Cedars Sinai and Mayo Clinic to correctly diagnose my condition.
I was not happy about this! I was too healthy and did not have time for this weird deal.

There is an awful lot to learn about this condition, so let's start here and let you begin your informational journey with a link to the Mayo Clinic Hypertrophic Cardiomyopathy Dept:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/care-at-mayo-clinic/mac-20350208
https://www.mayoclinic.org/departments-centers/hypertrophic-cardiomyopathy-
clinic/overview/ovc-20442502

And another outfit, not affiliated with the Mayo Clinic, but very informational:
https://www.4hcm.org/
I would encourage you to learn as much as you can about what is living inside your heart so that you can help make decisions going forward about your treatment options.
You mention you have been referred to an HCM doctor whom you liked. That's great news. This condition is not something that all cardiologist are that familiar with, and it is SO VERY IMPORTANT that you get the best treatment and options presented to you by an expert.
I don't want that you should end up like I did with misdiagnosis after misdiagnosis for years.
By the time I got the the Mayo Clinic, my heart was failing. I needed open heart surgery.
This is good you know now and don't have symptoms (That you know of :))

It is a lot to take in. Take your time and learn as much as you can. Be your own best friend!
Have you made a list of questions to ask after your tests? Did your HCM doctor suggest a cardiac MRI at some point?

Hello, Just diagnosed with HCM the week, Knew absolutely nothing about it and had no symptoms whatsoever (That i know of). I am 64 years old. Over past several cardiologist visits my doctor were concerned with the inverted T-wave on my ECG's. Over a couple of years of standard echo's the wall thickness went from 1.1 to 1.2 but for recent echo it jumped to 1.4, After MRI confirmed thickening to 1.4 they referred to HCM doctor. She was wonderful and spent 45 minutes explaining. a lot to take in, I have no known family history of HCM. I am extremely active (running & hiking) and really hoping this doesn't interfere with that! The doctor has scheduled me for a echo stress test to check for any obstructive component. She also has ordered genetic testing. Just trying to understand everything and get more info. Thank you

@stuffy You checked in to find out if you belong in this discussion group. Have you been diagnosed with HCM? I read that you had an echocardiogram and a thickness was discovered. When the results were discussed, what did the doctor say? What did your new PCP say about your bloodwork results? Please ask those questions!

We do not give medical advice or diagnose here on Connect. I am so glad to see that you receive medical care at Duke. Ask your PCP or gerontologist to set you up with a HCM expert there at Duke. As a COE, (Center of Excellence), you would receive the best care if that is your diagnosis. It is listed as a COE on the website of the Hypertrophic Myopathy Association, here is their website: 4hcm.org

Have you checked with your doctor about the Advanced Hydration Formula? We highly recommend doing so, there may be ingredients such as too much sodium that may be counterproductive. Yes, we are walking chemical factories and adding things to the mix changes us.

It has been during more recent times that HCM is among the possibilities if a person has a sudden death thought to be a heart attack. Besides your brother, have family members of the past experienced heart issues? Ask about a DNA test if you do have HCM. All of your blood relatives should be monitored if you do, it's an inherited disease. If the associated gene is among the ones known to cause HCM, blood relatives can have their DNA checked to see if they have it too. Here is a link to help you learn more about HCM https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198 This is an inclusive over-all summary, as we are each individuals, HCM is different in each of us.

When is your next doctor appointment? Have you contacted your present providers to set you up with a HCM cardiologist? Often, a referral is needed from your PCP. When you have your appointment, be sure to bring a pad and pen to write down what the doctor says. If you can have a relative or friend accompany you and take notes, that is even better.

Not sure I belong here but looking for clues. I'm 87, about to be 88, have high blood pressure, obesity, Factor V, but actually quite healthy otherwise. The last three days I have felt very dizzy in the morning, less so in the evening, and worried about being dehydrated. So I've been taking a potion called Advanced Hydration Formula supposedly taken by astronauts, and trying hard to drink more liquids, which I hate to do. Have had out of town company during this time so just now focussing on it. Also have recently had gut upset, enormous chemical factory sounds from the gut, that a wake me up at night, lots of gas, bloating, etc. My gerontologist diagnosed me with reflux last year when I was coughing at bedtime and suggested famotidine twice a day, which helped a lot, so much I stopped taking it. So yesterday I returned to that and the dizziness was better this morning - but also I wasn't cooking breakfast for a lot of people. I have very uneven energy, which I've had for maybe 20 years. I exercise regularly but my pool is being completely renovated, closed for about 3 months. Then the alternate pool I joined closed for a couple of weeks. So not as much lately. I have balance problems and use a rollator, so going for long walks in heat dome weather isn't the answer, though I do go up and down stairs on purpose - no shortness of breath. Possibly night sweats, but I can't discount the weather and the thermostat set at 77...and if I'm also dehydrated.... The bp has been under control recently with some new meds. I got a KardiaMobile and that tests fine, as did an echocardiogram I took last year. Pulse is in the 60s or low 70s. I think the reflux means I need to return to my low-carb diet. My brother died at 89 after suddenly becoming unable to breathe after a long walk in the desert in the winter. He was diagnosed with heart failure but I don't know that he didn't have that genetic kind of thickening of the chamber wall. I had some thickening, not much, in the echocardiogram. Headed to the beach tomorrow and want to make an appt today for when I return. Have brand new GP who I've only met, liked enormously, and she asked for a metabolic blood test that was perfect. This was in June. Do I call the GP, the gerontologist, get some cardio recommendations? These docs are all at Duke but UNC is also available to me.

@hs60marg

Hi, oHCM on Camzyos waiting for surgery.

Hi, my name is Dean. This is the second time I’ve written in. I am still in the process of being diagnosed for HCM. I am treated at the University of Pennsylvania in Philadelphia. I am 74 years old. I’ve always enjoyed excellent health with no previous heart problems. I am extremely active and athletic. My local cardiologist recommended the possibility of stents or pacemaker based on an extensive stress test. I took those results to the University of Pennsylvania, where I’m now being treated. U of P. Ruled out stents and pacemakers via an ablation of my heart, which was followed immediately with an extensive Echocardiogram. .The outstanding tests are still to be Completed. They are a Cardio, MRI and a sleep test. I fully understand the need for the cardio MRI. I’m wondering if that is the test that Is most definitive forthis diagnosis? I am wondering how important the sleep test actually is in this diagnostic process? It will involve me driving two hours and very heavy traffic into the center of old Philadelphia parking my car overnight and of course sleeping there overnight. Of course I will do all of that if it is deemed absolutely necessary. The cardio MRI has been delayed until late October do to Travel plans. The scheduling people said that was OK because if the doctors wanted that done in a quicker timeframe, they would have made it part of the order for the cardio MRI. Would love to hear anyone’s thoughts regarding this diagnostic process. Thanks so much. I am finding this group. Very helpful at a scary time.

@bacharach, hello and welcome to Mayo Clinic Connect.
Talk about a double whammy! How difficult it must be having not just one crummy condition, but two!
I'm glad you found the HCM group.
I wonder if you found any Sarcoidosis information here on Connect as well? I am posting a link from one of our esteemed Mentors @becsbuddy to one of the many the Sarcoidosis posts:
https://connect.mayoclinic.org/comment/957805/
What brought you to Connect?
Have you had a chance to read the many posts here on HCM?
You will be busy reading, and hopefully find some wonderful information that helps you.
Where is the sarcoidosis primarily affecting you?

I have hypotrophic cardiomyopathy. I also have sarcoidosis I would diagnose with sarcoidosis in 1994 and my cardiomyopathy I was diagnosed in 2015. I get tired a lot hard to breathe and I never have any energy doing my best to eat right and lose some weight.

@walkinggirl
Thanks for your note
I have HOCM and I have borderline asthma as I mentioned…. I had a heart murmur that went undiagnosed for almost 30 years until four years ago when I first got an echo and diagnosed me. I have low blood pressure, no blockages no a fib. I’m a never smoker and a non-drinker… Yes, shortness of breath did initially come from HCM and the metoprolol that I took for the first year. My shortness of breath has diminished quite a lot with CAMZYOS. I avoid things I’m allergic to so my asthma is usually under control.