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Every other day cannot function
I am so frustrated!! Every time I tackle my normal housework, the next day I can barely function. As long as I am sitting down, I am OK but as soon as I stand up and start moving, I feel like I am going to pass out, hard to breathe, dizziness, light headed and very weak. Lately, it seems like it is happening every other day and the day after any activity the day before. Have any of you with HOCM experienced this?? I was supposed to have Alcohol Ablation last month at the VA hospital in Aurora Colorado but they canceled the procedure. The doctor did not feel comfortable doing the procedure at the VA hospital as they hadn't done one for over 5 years. He referred me to Community Care with the University of Colorado Cardiac Department. However, they called and told me they had not received the referral from the VA so we are at a standstill. This last Sunday at church I almost had to leave and go to the ER for help but it settled down enough for me to complete the service. When I got home I basically had to stay sitting down. I am scared that the VA won't get their act together in time and I will pass away which is not my desire!! Have any of you who are veterans had these difficulty with the VA and Community Care???
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Please call your Cardiologist explaining what you noted above. They must find a way to temporarily treat this since it is getting too hard on you. If the Cardiologist is busy they normally have a nurse or assistant who can help you to see you right away as an emergency situation you have.
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1 ReactionI was diagnosed with HCM around March this year.
My obstruction caused me some shortness of breath when walking inclines or uphills. Other symptoms were light headedness, a little pain on left side of heart.
I was put on Camzyos around May and my symptoms improved!
Find a Cardiologist who may specialize in HCM. Hope you get help soon. Take care.
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2 ReactionsYou defiantly need a specialist who specialises in HCM & HOCM. I dont know if you have access to The Mayo Clinic or The Cleveland Clinic but they are both specialists in these areas. Good luck. Do you have any support?
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2 ReactionsYou definitely need alcohol septal ablation surgery. I had HOCM and had the surgery. I still experience periodic episodes of being light headed, dizzy, and am short of breath. I also have cardiac amyloidosis (stiff heart syndrome). You need to get to Mayo.
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2 ReactionsI will be traveling to the University of Colorado Medical Center next month to conference with three, HOCM doctors. Hopefully, we can find a solution.
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2 ReactionsI highly recommend you from University of Colorado Anschutz Campus Cardiologist Dr. David Raymer. He is the most experienced for HCOM. He got my heart back on track. You can make appointment with him by calling at his office in the same campus at (720) 848-5300.
He has outstanding reviews from patients.
https://www.uchealth.org/provider/david-raymer-md/
Since I started treatment with him I have no longer any chest pressure (angina) the color is back on my face. I am able to go jogging. I wish you the best.
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1 ReactionI, too, experienced lightheadedness, often with vertigo, after my septal myectomy at Mayo. To make a long story short, along with the lightheadedness, after two episodes of syncope due to arrhythmias, a pacemaker/defibrillator was installed. I wore a Holter for a month to diagnose this awful condition. My home cardiologist and colleagues well versed in HCM finally figured out what was amiss. Whether surgery or ablation, hearts are undergoing trauma and can show new symptoms down the line. Good luck and wishing you a great outcome!
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1 ReactionI am so sorry you are going through this. Is it possible for you to go to Anschutz, also in Aurora. They are a center of excellence. I think you will feel cared for there.
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1 ReactionHis colleague, Dr Edward Gill was in the research group in the Cleveland Clinic that developed Camyzos. He now practices at Anschutz as well.