HOCM, Camzyos, Zio Patch and possible need for defibrillator now....

Hello, @jmr091805! You have come to the right place because I am sure you will get input about all of your concerns. Every new step along the journey with HOCM carries the burden called "the unknown" and how it will affect our very being. My particular story is this: I acquired my ICD, its name is Buddy, about 5 months after a septal myectomy; I complained for a long time about dizziness and giddiness when moving about, never when sitting or lying down. I had a syncope and almost every cardiologist, many well trained in HCM, in 2 practices visited me in the hospital and/or looked at my tests and could not determine the cause. I wore a Holter monitor for a month, returned it to the lab, had another syncope, results of testing arrived which showed frequent arrhythmia when active and Buddy was installed. When I was examined or had testing, the arrhythmia never showed because I was sitting or lying down. Looking back on it now, I would have advocated for a stress type test. To address your specific questions: my experience has been excellent - not a dizziness or giddiness episode since. I hardly know it's there; I do tell people at TSA (I am sometimes screened with a pat-down or led to a different portal), at concerts, museums etc and am told to just walk around it. I have an implanted ICD between my heart and left shoulder. After the surgery one needs time to heal by keeping the left arm below shoulder level, limiting lifting to 5 pounds of less on that side, I slept in a recliner for a while and when I went out for a slower than normal 3-mile walk 48 hours after installation, I used a sling to minimize movement. Your particular care plan would be explained upon discharge. It's often considered outpatient surgery, you do have anesthesia, and if done early in the day, patients are often discharged after several hours. I do not remember pain, but was told if I did experience discomfort, to use ice and Tylenol. I have a monitor on my bookcase shelf in the bedroom which records activity. The Metronic (the brand ICD I have) people and providers in the cardiologist office can look at what's going on, when data is sent lights flash and the first time we saw that we thought we were having a thunderstorm. LOL! My battery is supposed to last 10 years, that varies according to how often the ICD does its job. Mine paces, I never had a shock in the 3+ years Buddy has been with me, my battery has 7 years left. The device is replaced when the battery life gets low and I have read that the procedure is easier than the initial installment. People are living their lives while using their 2nd, 3rd, 4th ICD. Every 6 months I get it checked by a nurse who works for the Metronic company. I miss the ability to sleep on my stomach. My battle scars from both the myectomy and the ICD (the outline and lump is visible), show when wearing a swimsuit! I consider it a very small price to pay for the peace of mind. This explanation is quite long, but I wanted to explain fully. If there are other concerns, followers of this topic will try to help you with those.

Here are some of the several links from the Mayo Clinic website that you may find useful to learn more about ICDs and that there are 2 kinds.
https://www.mayoclinic.org/tests-procedures/implantable-cardioverter-defibrillators/about/pac-20384692
https://www.mayoclinic.org/tests-procedures/implantable-cardioverter-defibrillators/multimedia/implantable-cardioverter-defibrillator-icd/img-20007914
https://www.mayoclinic.org/diseases-conditions/heart-arrhythmia/multimedia/pacemakers-defibrillator/img-20007313
By the way, today I learned from you that there is something called a Zio Patch! Are you now wearing a Zio Patch again as your cardiologist suggested? Is it comfortable to wear? How long do you need to wear it for each session?

Hello, @jmr091805! You have come to the right place because I am sure you will get input about all of your concerns. Every new step along the journey with HOCM carries the burden called "the unknown" and how it will affect our very being. My particular story is this: I acquired my ICD, its name is Buddy, about 5 months after a septal myectomy; I complained for a long time about dizziness and giddiness when moving about, never when sitting or lying down. I had a syncope and almost every cardiologist, many well trained in HCM, in 2 practices visited me in the hospital and/or looked at my tests and could not determine the cause. I wore a Holter monitor for a month, returned it to the lab, had another syncope, results of testing arrived which showed frequent arrhythmia when active and Buddy was installed. When I was examined or had testing, the arrhythmia never showed because I was sitting or lying down. Looking back on it now, I would have advocated for a stress type test. To address your specific questions: my experience has been excellent - not a dizziness or giddiness episode since. I hardly know it's there; I do tell people at TSA (I am sometimes screened with a pat-down or led to a different portal), at concerts, museums etc and am told to just walk around it. I have an implanted ICD between my heart and left shoulder. After the surgery one needs time to heal by keeping the left arm below shoulder level, limiting lifting to 5 pounds of less on that side, I slept in a recliner for a while and when I went out for a slower than normal 3-mile walk 48 hours after installation, I used a sling to minimize movement. Your particular care plan would be explained upon discharge. It's often considered outpatient surgery, you do have anesthesia, and if done early in the day, patients are often discharged after several hours. I do not remember pain, but was told if I did experience discomfort, to use ice and Tylenol. I have a monitor on my bookcase shelf in the bedroom which records activity. The Metronic (the brand ICD I have) people and providers in the cardiologist office can look at what's going on, when data is sent lights flash and the first time we saw that we thought we were having a thunderstorm. LOL! My battery is supposed to last 10 years, that varies according to how often the ICD does its job. Mine paces, I never had a shock in the 3+ years Buddy has been with me, my battery has 7 years left. The device is replaced when the battery life gets low and I have read that the procedure is easier than the initial installment. People are living their lives while using their 2nd, 3rd, 4th ICD. Every 6 months I get it checked by a nurse who works for the Metronic company. I miss the ability to sleep on my stomach. My battle scars from both the myectomy and the ICD (the outline and lump is visible), show when wearing a swimsuit! I consider it a very small price to pay for the peace of mind. This explanation is quite long, but I wanted to explain fully. If there are other concerns, followers of this topic will try to help you with those.

Here are some of the several links from the Mayo Clinic website that you may find useful to learn more about ICDs and that there are 2 kinds.
https://www.mayoclinic.org/tests-procedures/implantable-cardioverter-defibrillators/about/pac-20384692
https://www.mayoclinic.org/tests-procedures/implantable-cardioverter-defibrillators/multimedia/implantable-cardioverter-defibrillator-icd/img-20007914
https://www.mayoclinic.org/diseases-conditions/heart-arrhythmia/multimedia/pacemakers-defibrillator/img-20007313
By the way, today I learned from you that there is something called a Zio Patch! Are you now wearing a Zio Patch again as your cardiologist suggested? Is it comfortable to wear? How long do you need to wear it for each session?

@walkinggirl the zio patch is just a heart monitor your cardiologist orders for you that you stick to your chest and wear for a week or two. It is like a band aid in size. When you remove it and mail it to the lab in the provided envelope, the results are given to your cardiologist who interprets results and makes any decisions if needed based on your data. You only wear it if your cardiologist thinks you need to. I have worn it only a few times in the last few years.