I was recently diagnosed (yesterday) with Apical HCM

Welcome to Mayo Clinic Connect @raulm .
You must have a lot of thoughts swirling around in your head now that you just found out you have HCM.
And apical HCM at that.
Apical HCM is the more rare form of HCM and you would do well to make sure the specialist you choose to treat you has experience not only in HCM but apHCM (apical HCM). If that means more than one, two or three opinions that would be my advice! As many as it takes to feel confident.
The Mayo Clinic in Rochester, MN is the world's leading expert in treatment of both kinds of HCM, just to let you know.
Here is a link to Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/care-at-mayo-clinic/mac-20350208
Have you had a chance to read some of the apical hypertrophic cardiomyopathy posts here on Connect?
If you type apical hypertrophic cardiomyopathy in the search area at the top of the page, it will take you to any conversations with that topic.
Since this is so new to you, you must have a lot of questions. It is in your best interest to be as educated as you can be about what you have.
Research and learn as much as you can so you will be able to participate along with your doctor in decisions about treatment options.
It can be overwhelming to learn you have this condition. It will take some time to process all this new information.
Fear can be a common first instinct when just starting this unwelcome journey.
But don't let fear be your driving force. Learn as much as you can process overtime so you can take this challenge head on.
Are you healthy and active otherwise?
Do you have a good support system in your life?

Hello @raulm
I was diagnosed with Apical Hypertrophic Cardiomyopathy at the age of 78, so I know how scary it is to hear you have a genetic disease you have never heard of. I guess I was fortunate that an appointment with a cardiologist in my health system was not available for several months. Doning my own research, I learned that often, seeing a cardiologist who is not experienced treating Apical HCM, one can actually receive the wrong treatment or medication. So, after doing research regarding ApHcm, I was able to get an appointment at the Mayo Clinic in Rochester. It is a wonderful experience to be treated at Mayo. Everyone is pleasant and caring and I always feel uplifted when I leave. In fact, I just had an appointment and testing this week for my yearly visit and to address ongoing Afib and heart rate issues. You should definitely try to visit a Center of Excellence with an HCM Clinic. I would suggest you visit the Hypertrophic Cardiomyopathy Association web page. They have a listing of all the COEs and if you join, they will also help you get an appointment. https://www.4hcm.org.
I don't know where you live, but if at all possible my reccomendation would be Mayo Clinic, Rochester. I feel I can reach out to my cardiologist with a message when I have a concern and he always gets back to me with either reassurance, a virtual appointment, or as in my most recent concern with an appointment and testing.
I am now 82, and live an active, normal life, and find my initial fears were unfounded.

Thank you! This has been very helpful. I am in the Earlier stages of being diagnosed with some form of HCM. This is my second time reading your comments and they have been very helpful. I’m being treated at the university of Pennsylvania in Philadelphia. I have two major tests, outstanding all the other big tests have been completed. Stress test, etc. I now have an cardio MRI scheduled and they also want a sleep study. I understand the importance of the cardio MRI unfortunately I had to delay it until October due to travel plans, but I’m wondering the importance and necessity of the sleep study as it involves driving to Philadelphia In terrible traffic, parking the car overnight, etc. I am 74 years old and in very good health otherwise I have always been extremely athletic and continue to be. Any thoughts you have regarding the testing would be appreciated like which tests are most definitive. Thanks again for your comments. I will be going on the HCM website as per your advice.

@hs60marg ,

Glad to help. My ApHcm was originally diagnosed from an echo when a very sharp young lady picked up on the fact that in addition to thickness I also had a pouch on the apex of my heart . Local test called it an aneurysm, Mayo cardiologist calls it a pouch as it is not large enough to be an aneurysm. After echo, I then did have a cardia MRI which confirmed the diagnosis. Then I was able to see a cardiologist at Mayo. I did not have a sleep study, but believe that often happens. The first night at Rochester, I did wear a pulse oximeter that recorded my breathing and I believe (no was never told this) that based on my nighttime breathing, I did not need a sleep study. So, I can't really answer that question for you. When I had my first visit to Mayo, they redid all the tests I had had with the exception of the MRI (I have not had another one) and added a few more tests including an exercise stress test. Our HCM journeys are all different but try to relax. It sounds like you are in good health. When first diagnosed, I had no medications and my wonderful cardiologist told me to just live my life. But then I developed Afib and now do have medications but still can do anything I want. Good luck and keep us posted.

Can’t thank you enough for this invaluable information. I am so appreciative of the fact that you have taken this time to detail exactly what you’ve been through. It is providing a great deal of relief and a lowering of anxiety for me.

@hs60marg I am very glad to read that you are receiving care at the U of Penn in Philadelphia, a COE (Center of Excellence) listed on the website of the Hypertrophic Cardiomyopathy Association. They are thorough with all that testing, aren't they? Please ask your doctors about why a sleep study is recommended, we cannot give medical advice, there must be a reason if it is suggested. How is your sleep? Sleep apnea is considered dangerous. For many of us, sleep patterns change as we age. As with HCM, if you ask 100 people about their experiences with that disease, there will be 100 unique stories, I'll bet we all have our unique sleep tales.

Debra @karukgirl noted an important link to read. Here is an additional link which explains the different kinds of hcm along with possible treatments: https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/diagnosis-treatment/drc-20350204

Yes, what an inconvenience to need to go there, park your car overnight, and all the rest for a sleep study! I have a couple of suggestions. Would it be possible to find out if there is a reputable sleep study place closer to your home that would work with your doctor? Do you know someone (relative, friend) that lives near U of Penn where you could park your car overnight? Your relative or friend may be able to drop you off/pick you up or you can take a taxi, Uber or Lyft to the sleep study site.

I am glad @emo44 had so many suggestions for you and was able to describe his experience with Apical HCM. On the 4hcm.org website one can sign up for Zoom discussions/informational meetings which you may find helpful in learning all you can.

Knowing as much as possible helps you understand what the doctors explain as much as possible. Knowledge also helps you generate questions to ask.

@emo44 early in my journey, I was using the cardiologist nearest me in southern Delaware. They put a sleep monitor on me for 14 days then did a lengthy stress test. With other tests to follow. However, the day after the stress test they called me to come in right away. Their initial feeling was that I needed either A stent or a pacemaker. With that news, I immediately took those results to the University of Pennsylvania, first to a Doctor Who did exclusively pacemakers. He looked at the sleep study and said there was a minor abnormalitythat I did stop breathing some overnight, but he did not seem concerned. He informed me that I did not need a pacemaker and referred me to his colleague. That would do the test for stents where they go in with the wire into your heart. That was scheduled two days later, and he determined that I did not need a pacemaker however he saw thickening of the heart and some other small things. they have recommended doubling my statin to 40 MG, which I have always been on At 20 MGbecause of familial high cholesterol. And that I should start taking a baby aspirin. I have also been on losartan 100/25 for many years because of Family related high blood pressure. I have tracked down their hypertrophic cardio myopathy Group at U of Penn. Even though the MRI is still outstanding, I am asking them to move my care to this group. Interestingly, I’m kind of wondering now if the Family history of high blood pressure and high cholesterol was a clue to the hereditary factor this. Although I have three older brothers and none have had this particular heart related disorder in fact, they have had no heart trouble at all. The oldest brother died at 90 with no heart problems but high blood pressure. The next to the oldest brother died at 84 after five years of Alzheimer’s and the youngest brother, the one just older than me is now 80 he is a avid runner he is my height, 5 foot 10 and weighs 130 pounds Lol still running every weekend in races etc.. so the hereditary factor remains a mystery. Getting this down and writing is very cathartic for me

@hs60marg that should’ve said the second Doctor at University of Penn who did the wire into the heart determined that I did not need a Stent but noted the thickening or hardening of the heart.

@walkinggir Thanks, Appreciate all the support you guys are so good at. Yes getting in and out of Philadelphia is not fun. The sleep test unfortunately has to be done in one of three or four locations in the city itself so you want to get in and out without getting caught in a rush-hour. Pretty sure the university will supply parking for overnight. Right now my Main agenda is getting myself and my portal moved to the Hypertrophic Cardiomyopathy group. It’s taking some time and effort to accomplish that.