HOCM w/SAM

Posted by mrsbubbles @mrsbubbles, 21 hours ago

Hi. I was just diagnosed with HOCM with SAM and even though I could read things about this diagnosis on the web or information from my doctor, I'm really looking for others who are now considering surgery or were post-surgery (including the ablation procedure).

I'm kinda shocked because I've been with a top cardiologist in my area for over 8 years and had numerous tests including many echocardiograms and he never ever saw or told me that I have this condition. Even though I had the signs and symptoms for years which are disabling, he only said I'm stresses myself out, I ask too many questions, doesn't know why I have SOB, even when my heart rate is 35 he says I'm fine, basically gas-lighting me.

I finally changed cardiologist and he did one echocardiogram and I have severe HOCM.... No wonder why I'm feeling horrible every day, year after year.

Does anybody have/had similar issues trying to get diagnosed? I've had left and right angiograms and TEE and now waiting for a cardiac MRI to figure out if I'll have open heart surgery or the ablation procedure.

Any comments or stories would be appreciated. Thanks!

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

mrsbubbles | @mrsbubbles | 4 hours ago

In reply to @sbeechl "I had a septal Myectomy at the Mayo. Dr. Ommen is my cardiologist and Dr. Rowse..." + (show)

@sbeechl hi sbeechl ... Genetic yes! I've seen older people than me, running around, some working, carrying grandchildren on their hip and doing their lawn. I had to stop all that stuff years ago and I'm about 20 years younger than them. I also don't want to repeat a surgical procedure and all that entails pre- and post- op.

Your comment about the first day you were feeling better especially breathing. I want that too. So hopeful. It's been so long I'm feeling like I'm living in a black and white world either you feel good or you feel bad. I'm hoping that whatever procedure or surgical option I'll be getting that when I wake up from it and my eyes open, everything is color again and color is beautiful, all colors, all options! Like you're reborn starting a new chapter with things to do, places to go, volunteering and able to be ME again !!

Thanks for your story

bilingual84 | @bilingual84 | 4 hours ago

Hi @mrsbubbles and welcome!

I was misdiagnosed for 4 years from age 37 to 41. Because I was “so young” they tried to explain my symptoms away with anxiety and my weight gain. Finally my GP heard a murmur and sent me to a local cardiologist, who treated me for a faulty valve for two years. Finally I was referred to a HCM specialist, who confirmed I have HCM with obstruction and he put me on Camzyos. That was almost a year ago on the 6th of May. Camzyos works for me and my obstruction is gone, so are my symptoms (before I could barely shower I had such bad SOB).
I don’t know your age and the severity of your HCM, but I do advise you to read up as much as you can on the condition, ask your new cardiologist all the questions you have (even write them down so you don’t forget) and make a decision that is best for you.
In the meantime just breathe and don’t get yourself too worked up, but if you do come here and write 😉
I wish you all the best!

Linda, Volunteer Mentor | @walkinggirl | 4 hours ago

In reply to @sbeechl "I had a septal Myectomy at the Mayo. Dr. Ommen is my cardiologist and Dr. Rowse..." + (show)

@sbeechl What a nice story you shared! I, too, had Dr Schaff as my surgeon, it will be 4 years in July. Ablation was not recommended for me by 2 cardiologists. I did not feel improvement until I started becoming more active again, it was a revelation to walk quicker, walk up a hill or climb many stairs without losing my breath. It's a personal decision, but I, too am glad I followed my home cardiologist's advice and had surgery. Have you been tested genetically? Are your blood relatives monitored?

mrsbubbles | @mrsbubbles | 2 hours ago

In reply to @bilingual84 "Hi @mrsbubbles and welcome! I was misdiagnosed for 4 years from age 37 to 41. Because..." + (show)

@bilingual84 thanks for sharing your story.

I'm in my '60s and when I saw your comment about the shower I said omg I haven't used the shower for years because of this problem (actually new problem = HOCM). It's easier to have a bath because of the SOB and fatigue. Right now my obstruction is resting 60 and my provocation measurement is over 200. So many appointments, so many tests with the pulmonologist even though my lungs are clear. It's baffling.
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