HCM-ers: Introduce yourself or just say hi

It is so incredible really that so many of us seem to have the same experience of being misdiagnosed for years! I am so glad to hear you are feeling better now. For me that awful shortness of breath on the least amount of exertion, the tachycardia and head rushes just tying my shoes...it all disappeared right after surgery. It's no wonder you don't have much stamina...you just went through open heart surgery!!! It will take some time to get that back. One day at a time. I would guess that you also had blood loss anemia...that takes time to recover and will make you super tired besides everything else you are going through. Sounds like you are a champ! You are active and the hard part is behind you. I think the decision to go forward with open heart surgery is the hardest part of this whole deal. Once you make the decision, things just fall into place. I hope you never get atrial fib again too! Sounds freakishly scary! When do you see the cardiologist next? Did you write down any questions for him/her for next visit?

Good morning folks:

1) Pardon the typo above which stated that I was diagnosed at UCSF in May 2024!! It should have said May 2023.

2). Yesterday was my day 7 on 5 mg Camzyos. I’m. Keeping my fingers crossed because I actually had more energy yesterday than I have in a very long time.

I really appreciate this site and am very interested in hearing others’ stories, especially am tuned into those who are now on Camzyos to hear if it has helped you. I am trying to explain to my family what exactly a ‘myosin inhibitor’ is!

I was diagnosed with symptomatic obstructive HCM in May 2023. I’m under the care of UCSF and very grateful they took me on as a patient. As a very active nearly 69 year old woman who has always been ‘healthy as a horse’ it has been a huge adjustment. It took two ‘perfect storms’ - as my N.P. calls them - that ended me up in the ER by ambulance (in Jan 2023) to then get referred to a specialty clinic at UCSF for followup testing and diagnosis in May 2024. I’m starting Camzyos today. Trying to be brave and learn all I can. I have concern for my kids who may also have inherited the gene. Very glad to have found this support group.

Hi Debra, Thanks for your reply. I feel so much better now! Before my surgery, I could barely walk a flight of stairs. No A-fib since early April, thank god. That was the scariest thing ever! I don't have as much energy or stamina as I would like, but I think its the metoprolol slowing me down. I am still on 50 mg twice daily. I get a little winded when doing stairs or walking quickly. I am hoping thats a side effect of metoprolol? I am also still on Xarelto. I will reach out to the team thru the portal and get their recommendations. They do respond quickly. Thanks again for your reply. Its nice to speak to someone who has had similar experiences. Its hard to believe that so many of us have gone misdiagnosed for so long.

Have you contacted your surgical doctor's office or the HCM department at the Mayo clinic and asked them for a recommendation in your area? There definitely are specialists if you are close to NYC or Phili, especially in northern NJ. I did a google search for you and found HCM departments in Bergen county and one in Morristown using "Hypertrophic cardiomyopathy specialists in NJ".

Contact for sure:
https://4hcm.org
They are the leading organization nationally advocating for, and helping patients. And, they are based in New Jersey.

Hello Donna, @dleston, Welcome to Mayo Connect!
I feel the same way as you do about my septal myectomy at Mayo. I have never seen such a well-run, efficient, amazing organization as the Mayo/St. Mary's. I also experienced the exact same scenario before I was diagnosed and was misdiagnosed for four years with various garden variety heart conditions. You got two wonderful responses from members @nbs and @captainterry with really good information. I too had to return home to a town with no experts in treating HCM, and my original cardiologist who had misdiagnosed me was the best we had. It made me feel insecure as I wanted to only be seen at Mayo. Not realistic or practical for me in Northern California. My surgery was three years ago, and I was seen once by the local cardiologist and have since fallen through the cracks with his practice and have not been seen by anyone for two years. I am on no heart medications after working with Dr. Ommen through the Mayo patient portal. Just last year he told me to quit the beta/calcium channel blockers because I was having such a hard time on them. I feel great now...but I too am concerned about not having a cardiologist where I live that is experienced with this. I do hope you are able to locate one near you, but if not, I would encourage you to educate your doctor by learning as much as you can and share with him. Practicing medicine is a life long learning process, and I believe physicians are eager to learn about new things to help them practice better patient care. I noticed that after I was diagnosed (correctly) that I was the only patient in his practice with this and that seemed to spark some interest beyond just breezing through the brief appointments. Sadly, his practice is so busy it is easy to fall off the radar, which I did. Since I'm doing well, I haven't had a reason to go back yet. I am planning to make an appointment this year to get an echo done just to confirm all is well. I am three years out and you are only a few months, so I understand your concern right now. Since you had a septal myectomy, you no longer have the obstruction, but you still have HCM. Have you contacted the HCM dept. at Mayo through the patient portal? They may have some advise that can help you. I reached out just a few months ago and was told by the nurse that if I had any recurring symptoms I was welcome to schedule and appointment with them anytime. That is a sign of at Center of Excellence! That would be my advice to you...contact the HCM dept. thru the patient portal. If nothing else they can alleviate some fear you may have and perhaps offer some advice you can use. How are you feeling now? Are you recovering and getting back to your new life without HOCM?

Hello, I had septal myectomy and MASE procedure at Mayo Clinic in March 2023 after a January 2023 diagnosis of Hypertrophic Obstructive Cardiomyopathy-age 60. I have to say that my experience at the Mayo Clinic was phenomenal and I couldn’t have been given better care. I never felt so confident and safe before. Prior to engaging with Mayo, I had a horrible experience trying to find a doctor in my state of New Jersey that truly cared and was interested in finding out what was causing me the symptoms I was having. My diagnosis finally came after switching cardiologists over the course of 4 years. Unfortunately while I was at Mayo, that doctor left the practice and is now working in a Veterans Hospital. I do not know how to find a cardiologist who specializes in HOCM in my state of New Jersey. I did my post op follow up with another cardiologist in the practice, but I would feel more confident seeing one who specializes in the treatment of HOCM. Any advice would be greatly appreciated.

Hello, I had septal myectomy and MASE procedure at Mayo Clinic in March 2023 after a January 2023 diagnosis of Hypertrophic Obstructive Cardiomyopathy-age 60. I have to say that my experience at the Mayo Clinic was phenomenal and I couldn’t have been given better care. I never felt so confident and safe before. Prior to engaging with Mayo, I had a horrible experience trying to find a doctor in my state of New Jersey that truly cared and was interested in finding out what was causing me the symptoms I was having. My diagnosis finally came after switching cardiologists over the course of 4 years. Unfortunately while I was at Mayo, that doctor left the practice and is now working in a Veterans Hospital. I do not know how to find a cardiologist who specializes in HOCM in my state of New Jersey. I did my post op follow up with another cardiologist in the practice, but I would feel more confident seeing one who specializes in the treatment of HOCM. Any advice would be greatly appreciated.

Hello, I had septal myectomy and MASE procedure at Mayo Clinic in March 2023 after a January 2023 diagnosis of Hypertrophic Obstructive Cardiomyopathy-age 60. I have to say that my experience at the Mayo Clinic was phenomenal and I couldn’t have been given better care. I never felt so confident and safe before. Prior to engaging with Mayo, I had a horrible experience trying to find a doctor in my state of New Jersey that truly cared and was interested in finding out what was causing me the symptoms I was having. My diagnosis finally came after switching cardiologists over the course of 4 years. Unfortunately while I was at Mayo, that doctor left the practice and is now working in a Veterans Hospital. I do not know how to find a cardiologist who specializes in HOCM in my state of New Jersey. I did my post op follow up with another cardiologist in the practice, but I would feel more confident seeing one who specializes in the treatment of HOCM. Any advice would be greatly appreciated.