HCM-ers: Introduce yourself or just say hi

Your description sounds just like mine in the sense that I thought I was "healthy as a horse' until I was diagnosed with symptomatic obstructive HCM in Sept. 2022. I am almost 68. I have now been on Camzyos for almost 4 month. I have always tried go for a 3-4 mile walk every day but found each year my symptoms were getting worse which involved not being able to walk up any incline or stairs, without having to stop and regroup, chest pressure, etc . This would come and go. Echos show that my septum is partially thickened and that partial area doubled in one year but is not thick enough to allow surgery. Once on Camyzyos my LVOT went from 101 and has settled at 24. My EF is still at 74. However, I have never had any other heart issues as in arrhythmia, no other thickening of any of my heart walls, normal chamber pressure in the rest of my heart, etc. And for all of these reasons minus the obvious diagnosis of OCMO my cardiologist strongly felt that I would be a perfect candidate for Camzyos. I have had no real side effects once they adjusted my dose for 5 MG to 2.5 and haven't felt this consistently great in years. If you have the time read through this thread. Very few people have the same heart issues. My cardiologist is at Washington Univ. where they were and still are part of the research for Camzyos and have a division in cardiology just for HCM. I had genetic testing which did not show that I have the gene but the research cardiologists think that it is always genetically linked. There are many gene sequences they can test for HCM and the most common one they used for me did not match but that doesn't mean I don't carry the gene. I am excited for you and it sounds like you are in terrific hands. My feeling is that we are all very lucky that this research is going on now and even if our children have the gene and display symptoms for HCM they will be treated earlier and with more knowledge.

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Your description sounds just like mine in the sense that I thought I was "healthy as a horse' until I was diagnosed with symptomatic obstructive HCM in Sept. 2022. I am almost 68. I have now been on Camzyos for almost 4 month. I have always tried go for a 3-4 mile walk every day but found each year my symptoms were getting worse which involved not being able to walk up any incline or stairs, without having to stop and regroup, chest pressure, etc . This would come and go. Echos show that my septum is partially thickened and that partial area doubled in one year but is not thick enough to allow surgery. Once on Camyzyos my LVOT went from 101 and has settled at 24. My EF is still at 74. However, I have never had any other heart issues as in arrhythmia, no other thickening of any of my heart walls, normal chamber pressure in the rest of my heart, etc. And for all of these reasons minus the obvious diagnosis of OCMO my cardiologist strongly felt that I would be a perfect candidate for Camzyos. I have had no real side effects once they adjusted my dose for 5 MG to 2.5 and haven't felt this consistently great in years. If you have the time read through this thread. Very few people have the same heart issues. My cardiologist is at Washington Univ. where they were and still are part of the research for Camzyos and have a division in cardiology just for HCM. I had genetic testing which did not show that I have the gene but the research cardiologists think that it is always genetically linked. There are many gene sequences they can test for HCM and the most common one they used for me did not match but that doesn't mean I don't carry the gene. I am excited for you and it sounds like you are in terrific hands. My feeling is that we are all very lucky that this research is going on now and even if our children have the gene and display symptoms for HCM they will be treated earlier and with more knowledge.

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Thank you so much for sharing your detailed description of the condition we share. It really helps to know others on this path. I do hope that backpacking (even a little!) with my son is still in my future!! Take care. Glad you have a good medical spot in Washington,

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Hi. Just a quick comment on genetic testing. I was advised that if my genetic test is positive, then my kids (who are in their 40s) need testing, But if negative, then they don't. In any case, while waiting for all this to happen, they have had screening echocardiograms and are fine.

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I was advised for my children to get an ECHO for baseline and regular followup in spite of the fact that my results from genetic testing were “negative”.

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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.

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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.

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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.

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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?

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