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Hi @lakeview -
Sorry for your symptoms. The more I know the more optimistic I become my HOCM and other heart problems will be successfully addressed. Hang in there. Be thorough. Be patient.
Please carefully read all the helpful responses, especially
Debra, boatsforlife, and mpig.
Also, please realize heart failure is NOT cardiac arrest. All of us afflicted with HOCM are suffering heart failure to some degree. The HF term is unfortunate and totally misleading.
Immerse yourself in the CAMZYOS website. The thoroughness with which this drug is being implemented and monitored is so impressive. Skeptical like you, I asked the drug reps and my cardiologist if I was being used as a guinea pig. NO was the emphatic answer.
Most importantly, find yourself a cardiologist who is part of the Camzyos network—the REMS program. In NJ, I had many choices. You want cardiologists experienced with this amazing drug.
I asked all members of this group a couple of weeks ago how long it would take for benefits. The number of answers saying "immediately" or "within a week" blew me away.
I have symptoms like you do. But no wheelchair. After walking on flat terrain for maybe fifty feet, I get winded and must rest. Symptoms worsen later in the day and night. Other symptoms include feeling pressure or tightness in my chest. And lightheadedness. Any effort getting up from a resting position produces all these symptom every time. I have no problem bending over to tie shoes. (Everyone is different.)
My last advice is to make sure HOCM is correctly diagnosed. I've now had a specialized (for HOCM) echocardiogram (including injected dye and the valsalva maneuver), a stress echo on a treadmill, and a double catheterization beginning at the tops of both legs so all heart arteries could be checked.
In early Dec., I'll get a T-E-E, which is a tube down the esophagus which allows ultrasound to provide a picture of the working heart, including all four valves.
My cath suggests, in addition to HOCM, a mitral valve leak, which T-E-E will confirm. I used Camzyos for ten days, but was taken off until an accurate diagnosis of all my problems could be gotten. After the mitral valve is fixed, I expect to be put back on Camzyos, the results of which I'll comment on here.
Replies to "Hi @lakeview - Sorry for your symptoms. The more I know the more optimistic I become..."
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Gary, Thank you for your helpful information….lakeview
On Wednesday, November 13, 2024, 04:14:43 PM EST, Mayo Clinic Connect < nf+7b6f4384+25387124@n1.hubapplication.com> wrote:
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Mayo Clinic Connect
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Hi @lakeview -
Sorry for your symptoms. The more I know the more optimistic I become my HOCM and other heart problems will be successfully addressed. Hang in there. Be thorough. Be patient.
Please carefully read all the helpful responses, especially
Debra, boatsforlife, and mpig.
Also, please realize heart failure is NOT cardiac arrest. All of us afflicted with HOCM are suffering heart failure to some degree. The HF term is unfortunate and totally misleading.
Immerse yourself in the CAMZYOS website. The thoroughness with which this drug is being implemented and monitored is so impressive. Skeptical like you, I asked the drug reps and my cardiologist if I was being used as a guinea pig. NO was the emphatic answer.
Most importantly, find yourself a cardiologist who is part of the Camzyos network—the REMS program. In NJ, I had many choices. You want cardiologists experienced with this amazing drug.
I asked all members of this group a couple of weeks ago how long it would take for benefits. The number of answers saying "immediately" or "within a week" blew me away.
I have symptoms like you do. But no wheelchair. After walking on flat terrain for maybe fifty feet, I get winded and must rest. Symptoms worsen later in the day and night. Other symptoms include feeling pressure or tightness in my chest. And lightheadedness. Any effort getting up from a resting position produces all these symptom every time. I have no problem bending over to tie shoes. (Everyone is different.)
My last advice is to make sure HOCM is correctly diagnosed. I've now had a specialized (for HOCM) echocardiogram (including injected dye and the valsalva maneuver), a stress echo on a treadmill, and a double catheterization beginning at the tops of both legs so all heart arteries could be checked.
In early Dec., I'll get a T-E-E, which is a tube down the esophagus which allows ultrasound to provide a picture of the working heart, including all four valves.
My cath suggests, in addition to HOCM, a mitral valve leak, which T-E-E will confirm. I used Camzyos for ten days, but was taken off until an accurate diagnosis of all my problems could be gotten. After the mitral valve is fixed, I expect to be put back on Camzyos, the results of which I'll comment on here.
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