1. < Hypertrophic Cardiomyopathy (HCM)
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How to decide whether to take Camzyos or have surgery?

Posted by doctorboo1 @doctorboo1, May 19 11:56am

I have recently been diagnosed with obstructive HCM. My doctor is pro-drug treatment but after reading about the surgical option, I wonder if drug is just postponing the inevitable. I'm 79, and was still an avid cyclist, hiker, walker, swimmer, etc until this hit. Basically, I refuse to change my lifestyle, much, and wonder if getting surgery is ultimately a good option. It sounds like it is usually successful. I sure don't want to wait until I decline in fitness etc.

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Linda, Volunteer Mentor | @walkinggirl | May 31 9:00am
In reply to @doctorboo1 "@walkinggirl Thank you for your experience. I just got some really bad news. When I proceeded..." + (show)
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@walkinggirl Thank you for your experience.
I just got some really bad news. When I proceeded to get into the Mayo system I was told in no uncertain terms that Mayo no longer accepts Humana insurance. Further research showed Humana was dumped on January 1.
While UT Southwestern is a COE, they are blocking me too, even though I've been there many times but under my old coverage and yesterday for an x-ray.
Now im struggling with whether Camzyos will help long enough to get to next December to change my coverage back.
Really upset about it. Working on any work around i can think of. Suggestions would be appreciated!😢

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@doctorboo1 Oh, no! Your news truly stinks and as far as the USA insurance goes, my opinion is.... It's up to your doctor about the Camzyos. From what people posted and my doctor said when asked, it's a miracle drug, it does nothing, it helps for a time and then does not. I have no experience to share; it was still in testing stages in 2022 when I had surgery. Now, may I suggest you contact the Hypertrophic Cardiology Association at 4hcm.org and have an intake session with them. The excellent people working there have dealt with many different situations, including rejected insurance. When 2026 began, many people, including you and me, have had to deal with an unexpected negative situation.

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doctorboo1 | @doctorboo1 | May 31 2:02pm
In reply to @walkinggirl "@doctorboo1 Oh, no! Your news truly stinks and as far as the USA insurance goes, my..." + (show)
Profile picture for Linda, Volunteer Mentor @walkinggirl

@doctorboo1 Oh, no! Your news truly stinks and as far as the USA insurance goes, my opinion is.... It's up to your doctor about the Camzyos. From what people posted and my doctor said when asked, it's a miracle drug, it does nothing, it helps for a time and then does not. I have no experience to share; it was still in testing stages in 2022 when I had surgery. Now, may I suggest you contact the Hypertrophic Cardiology Association at 4hcm.org and have an intake session with them. The excellent people working there have dealt with many different situations, including rejected insurance. When 2026 began, many people, including you and me, have had to deal with an unexpected negative situation.

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@walkinggirl
Thanks for sharing. I had started a conversation with the Association but never got fully into it. Guess I need to go back and have the intake interview.
I have started the Camzyos and after 4 days, I do believe it's beginning to improve my symptoms.
I still am inclined to have the surgery but am hoping the drug will allow me to buy some time while I work things out and see if there's any work around on the insurance.

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Jayconn1960 | @dconner | Jun 3 12:08pm
In reply to @dconner "I’ve been on Camzyos for 4 weeks, and because of my symptoms, how I still feel..." + (show)
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I’ve been on Camzyos for 4 weeks, and because of my symptoms, how I still feel exhaustion, , extreme fatigue, chest pain on left side of my chest, feeling bad most of the time, especially after doing something. Had my 1 month echo yesterday, and it did show some improvement such as:
• Left Ventricle: Normal size. Moderate septal thickening. Normal wall motion. Normal systolic function. EF by 2D
Simpson biplane is 70%. No LVOT obstruction at rest. LVOT pressure gradient increases with Valsalva. LVOT peak
gradient at rest is 5 mmHg. LVOT peak gradient during valsalva maneuver is 31 mmHg.
• Mitral Valve: No systolic anterior motion. Trace mitral valve regurgitation.
• Right Ventricle: Normal size. Normal
Even though this shows improvement, I still want to stop Camzyos therapy and have Septal Myectomy surgery. Waiting for my cardiologist to call me today to discuss results and surgery. What is the possibility that my cardiologist will ok proceeding with surgery after I’ve been off of Camzyos the recommended time. I’m just really not crazy about taking this medication for a long time because I don’t know how it’s going to react to my body a long time from now. It’s my body and I know how I feel!

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@dconner, got an appointment for testing and with a Thoracic surgeon on June 24! Looking forward to getting the ball rolling.

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doctorboo1 | @doctorboo1 | Jun 3 2:09pm

For those of you who have had the myectomy and are in good health, how long was your recovery period where you had to curtail most activities and exercise?

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hocm2025 | @hocm2025 | Jun 4 8:46am
In reply to @doctorboo1 "For those of you who have had the myectomy and are in good health, how long..." + (show)
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For those of you who have had the myectomy and are in good health, how long was your recovery period where you had to curtail most activities and exercise?

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@doctorboo1 Walking starts on day 1, increasing in duration and challenge as recovery progresses. 7 weeks out, I took a stress test and recorded results ~ 50% higher than avg for my age/gender. I re-started my small group fitness classes 3-4 mos. post-surgery and haven’t looked back.

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Linda, Volunteer Mentor | @walkinggirl | Jun 4 4:46pm
In reply to @doctorboo1 "For those of you who have had the myectomy and are in good health, how long..." + (show)
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For those of you who have had the myectomy and are in good health, how long was your recovery period where you had to curtail most activities and exercise?

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@doctorboo1 I was out of bed and walking -oh so slowly- 24 hours after surgery. Five nights in the hospital then we drove home taking 2 days and stopping at rest areas to walk around every 90 minutes - 2 hours. We were home 1 week after surgery. I was walking up and down our driveway 110' starting the next day, going sideways up and down steps, cooking (husband put pots on the counter) and doing things that did not involve lifting. We are all different and at different fitness levels, that will make a difference. I was/am a walker and went/go to the gym. In preparation for surgery, I highly recommend leg and core exercises with your doctor's OK. No driving for 4 weeks. One needs to listen to their body, and I did go to cardio rehab for 3 visits. Before I could "get in" I began going to the gym, the owners had worked in cardio rehab and supervised me getting started. I am retired, if I had a desk job, I would have been ready to return to work part-time (from home or a very easy commute) 4 weeks after surgery. Six weeks may be standard. You are unique and your personal "timetable" to resume your regular life will vary from the timetables of others.

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