Hello. I am a woman, age 58, diagnosed with severe HOCM (max. LV wall thickness 20-22mm). I was misdiagnosed at age 41: Following an echocardiogram, I received a written report by a cardiologist stating I had a benign and healthy 'athletic heart' and specifically did not have HCM - that cardiologist orally reassured me that I was robustly healthy and never to worry. I then went many years until now experiencing escalating deteriorating health (near-fainting is my primary symptom - body tingles, my sight goes 'black', I start losing consciousness) and many more misdiagnoses (e.g., told it was 'all in my head', anxiety, normal aging to which I should adjust). I received improper medications (e.g., diuretics and ACE inhibitors) which I have now learned worsened my health condition. At age 50 I did faint (likely due to this condition but exacerbated by a medication adjustment by a physician) and the episode was catastrophic in my life (broken leg, multiple concussions, then, over time, learned I'd jarred two molars, botched root canal attempts, developed cellulitis in the face, then had c-diff which initially was misdiagnosed a few times, and FURTHER illness after that - - those years were quite horrible). I acquired a distrust and wariness of physicians. Last summer during prolonged hot weather, my feet and lower legs repeatedly swelled and my abdomen became profoundly distended with a water weight gain of approx. 6 lbs. or so (I would lay down and rest and put my legs up to relieve that condition). So, four months ago, two physicians listened to my heart with a stethoscope and told me I had a bad aortic valve and definitely would need open heart surgery: It was the echocardiogram then that showed severe HOCM. The cardiologist told me that the noises from my heart mimicked the aortic valve problem. I trust my present cardiologist who is evaluating me for an ICD. Presently I am wearing a 30 day event monitor and then will next meet with an electrophysiologist. So, I have a few questions now, please. 1. Last summer when my feet and lower legs swelled, for no reason 2-3 times a vein would burst. Why is that? 2. For exercise I prefer to do lengthy gentle water aerobics. a.In the deep water (when my chest is in the h20), I always am coughing out a lot of foamy clear phlegm. The cardiologist said he thinks it means nothing, but no one else around me in the pool is ever coughing up nonstop phlegm. Why is that, please??? b. I sense that my heart and body feel much more 'stable' when I am in deep water, and I like to spend approx. 1 1/2 hrs. nearly every day doing gentle aerobics in a pool, with perhaps 1/2 the time submerged to my neck. Even tho' this triggers me to cough out clear phlegm, I feel that something about the hydrostatic pressure on me helps me such that I am not at risk to feel a near-faint in the pool (as I do so very often 'on land'). Can you please explain to me if this makes sense and if my hunch and gut-feelings are true, what is happening inside of me that is so good for me when I am submerged in deep water!?! 3. I just received my cardiac MRI report and am studying online as to its meaning. a. Why is there no Left Atrium Volume value in the report? b. Why is there no Interventricular Septum Thickness (IVS) value given in the report? c. Why is there no measures of Septal Mass gm. and Non-Septal Mass gm in the report?? 4. Two cardiac nurses conducted a treadmill stress test using the Bruce Protocol. At one point, I began to exhale heavily and started to trot/run and no longer walk. The nurse told me I had to breath in my nose and out my mouth, and that I had to walk not trot/run, and then she directed me to slow my breathing. I soon elected to end the test because those directions made things uncomfortable for me and I had a hunch the nurse was telling me the wrong thing. Now that I've studied what the Bruce Protocol is, I believe the nurses directed me all wrong and shouldn't have done what I described happened. 5. In my cardiac MRI report it states the following: "Myocardial mass 168 grams; index 81 g/sq m". I've searched online and cannot figure out what that means. I assume its the septal/septum mass. Is there a chart that can tell me 'how bad' that is?? 6. Last, based on my reading, I am leaning to feel that alcohol ablation could be helpful and appropriate for me and suited to me (it's less invasive than other options, and I read that it actually helps heal and reverse the core problems over time). Does my view seem reasonable or not, in light of how the literature seems to state clearly that alcohol ablation is not 'the gold standard' of treatment for HOCM. 7. My new cardiologist has stated to me that the HOCM issue is 'electrical'. I think he means that the risk I face is dropping dead/sudden death. Does that seem to be an accurate characterization of the issues posed to the HOCM patient? 8. My first electrophysiologist appointment is said to be a 'meet and greet'. Can you tell what is likely to happen over time? Thank you so much! Tricia in Minnesota
Hi, understand your predicament. Hypertrophic cardiomyopathy often goes undiagnosed because many people with the disease have few, if any, symptoms. In a small number of people with HCM, the thickened heart muscle can cause shortness of breath and problems in the heart's electrical system, resulting in life-threatening abnormal heart rhythms (arrhythmias). ICD may be recommended for people with hypertrophic cardiomyopathy who are at high risk of sudden cardiac death because of abnormal heart rhythms. Hence your doctor would have recommended an ICD implantation. Regards.
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