I am happy to have found your channel, have been diagnosed with dilated cardio myophathy 12 years ago. I am currently recovering from an ICD implementation operation.
Thank you for posting this video. I received my Boston Scientific Emblem S-ICD two weeks ago. I was feeling like a wimp needing so much pain medicine and was told I could stay for as long as I needed to in the hospital until it was controlled. But there’s just no sleeping in there, so I chose to go home and use the lighter medication and ice at home. That was pretty brutal for me. Maybe because I’m a 5’4” 105lbs female, or maybe I just really am a wimp with pain! lol I was able to wean off the pain killers by day 8. But continue to use ice and take it easy on day 12 as I write this. My first week with the device I thought I received a shock but was told it wasn’t recorded as one. I saw my chest move down the center and clench tightly and spasm. Felt like electricity was jolting through me. This was after being asleep and my dog startled me awake by barking at the Amazon guy. I felt like I was going to faint but after that happened it went away. It was not a pleasant experience but definitely not a “swift kick to the chest” as they describe in the instruction manual. I’ve yet to go to my post op (tomorrow), but I think it may have been the pacing electrodes? Something definitely happened. Have you experienced anything like that? Thank you for explaining what the shock will be like when it does happen. I have lived with sudden cardiac death looming over my head for 6 months with my heart failure and HCM. But now I have the fear of a shock coming on. Which seems ridiculous comparatively I guess. But it’s still new to me. And I’m adjusting. Sorry for the long message! I hope you are still doing well with your device and are enjoying life! ❤
Hey thank you for commenting, sounds like you have also been through a lot! It can feel very strange for a while after the operation I did get a few sharp stabbing pains but nothing which felt like a shock. I have found I’ve awoken on occasion and felt like I’d had a shock only to be told I hadn’t. I think having had some real shocks looking back it may have been anxiety about being shocked or just some other unconnected pains. Over time you just start to forget about it and think about it a little less each day to the point it’s just becomes normal. A couple of family members have S-icd fitted and have never received a shock. Hopefully it’s something that won’t get used often but just there for an emergency. I’m still living a great life and can still do many of the things I want to do. Im sure you will get to this point soon, just take your time and please feel free to ask any questions and I’ll always help if I can! Sam
@@cardiomyopathyandme5970thank you for your reply! It really helped ease a bit of my depression knowing I’m not alone. And it is very comforting to know I can continue to do a lot of my favorite activities. Thank you, Sam! You are an inspiration for us newbies!
Sounds like we had similar experiences in how things happened. At the time I was a marathon/ultra marathon runner, and I knew something was wrong with my heart for around 18 months (symptons were changing/getting worse over that period) but no family history of heart issues and I had every test under the sun done. Got the all clear on every EKG/ECHO/PET/MRI/CT etc etc., doctors mystified (to the point I don't think they believed me that there was a problem). Eventually, my cardiologist asked me to wear a Holter monitor for 2 weeks. He got the Holter data back, called me, told me in no uncertain terms to get to the nearest hospital immediately. My Holter showed 22 VTs, longest lasting 15 mins with a peak heart rate of 444, over the 2 week period. I didn't know it at the time, but obviously I should've been dead. I got to the hospital not really knowing what was happening, they did lots more tests, then an EP study, and then I had dual chamber ICD fitted in March 2022 (I needed pacemaker too because of low natural heart rate). I don't really feel like I was given a choice on the ICD! It was pretty much you're getting an ICD or you'll die at any moment. Because I had dual chamber ICD my recovery process was a little different to yours because of different ICD location. So couldn't use left arm for 2 weeks, couldn't lift it above my shoulder for 6 weeks. Now on a daily basis I don't feel it too much. I'm still restricted in terms of not being able to lift significant weight above my shoulder on left side, but otherwise it's fine. I got my first shock in August 2022, so about 5 months after implantation. Very similar experience to you. I knew I was in VT a couple of seconds before, but I don't think anything prepares you for the first shock. It took a little while for my brain to work out what had happened and for my motor skills to kick back in. Mentally it was a reality check for me too. I think I had been lulled into thinking life was back to normal again, and then it was like boom, and everything changed again.
Very similar experience! I can relate to most of what you’ve said, not the same icd but many of the same symptoms. The shock is something else and I try to play it down a little as not to scare the people who haven’t been shocked, some of my family members also have icds that have never triggered so I just say it hurts a bit 😂. Keep battling, I’ve had four set backs with shocks etc but I’ll keep getting up and looking for ways to improve. VT ablation is the next stop, fingers crossed that buys me some symptom free time.
@@cardiomyopathyandme5970 Ha yes that makes sense! For some reason I hadn't ever truly contemplated what a shock would feel like, so I hadn't mentally or physically prepared for it. So the first time, I happened to be hiking with some friends, and my first instinct was that for some reason the person behind me had punched or kicked me, and I was thinking "who punched me?!". It took a couple of seconds for me to put it together, realise that it was a shock, and then I was able to gather myself ok and felt mostly in control physically. Second time was a double shock and I most definitely was not in any control 😂. I would say both times it took me a good 4 weeks or so before I felt physically "normal" again. I've noticed over time that it takes me longer and longer to recover after each VT episode. Good luck on the VT ablation! Endocardial didn't work for me, but then epicardial did (so far!). All of the data out there shows it's really effective at controlling the arrhythmias/VTs, so hopefully a positive next step for you!
Very well explained Sam. Thanks
I am happy to have found your channel, have been diagnosed with dilated cardio myophathy 12 years ago. I am currently recovering from an ICD implementation operation.
@@deliciahoveka6558 thank you and I hope your recovery is quick. It takes some getting used to! Any questions please always feel free to ask
Thank you for posting this video.
I received my Boston Scientific Emblem S-ICD two weeks ago. I was feeling like a wimp needing so much pain medicine and was told I could stay for as long as I needed to in the hospital until it was controlled. But there’s just no sleeping in there, so I chose to go home and use the lighter medication and ice at home. That was pretty brutal for me. Maybe because I’m a 5’4” 105lbs female, or maybe I just really am a wimp with pain! lol
I was able to wean off the pain killers by day 8. But continue to use ice and take it easy on day 12 as I write this.
My first week with the device I thought I received a shock but was told it wasn’t recorded as one. I saw my chest move down the center and clench tightly and spasm. Felt like electricity was jolting through me. This was after being asleep and my dog startled me awake by barking at the Amazon guy. I felt like I was going to faint but after that happened it went away. It was not a pleasant experience but definitely not a “swift kick to the chest” as they describe in the instruction manual. I’ve yet to go to my post op (tomorrow), but I think it may have been the pacing electrodes?
Something definitely happened. Have you experienced anything like that?
Thank you for explaining what the shock will be like when it does happen.
I have lived with sudden cardiac death looming over my head for 6 months with my heart failure and HCM. But now I have the fear of a shock coming on. Which seems ridiculous comparatively I guess. But it’s still new to me. And I’m adjusting.
Sorry for the long message!
I hope you are still doing well with your device and are enjoying life! ❤
Hey thank you for commenting, sounds like you have also been through a lot! It can feel very strange for a while after the operation I did get a few sharp stabbing pains but nothing which felt like a shock. I have found I’ve awoken on occasion and felt like I’d had a shock only to be told I hadn’t. I think having had some real shocks looking back it may have been anxiety about being shocked or just some other unconnected pains.
Over time you just start to forget about it and think about it a little less each day to the point it’s just becomes normal. A couple of family members have S-icd fitted and have never received a shock.
Hopefully it’s something that won’t get used often but just there for an emergency. I’m still living a great life and can still do many of the things I want to do. Im sure you will get to this point soon, just take your time and please feel free to ask any questions and I’ll always help if
I can!
Sam
@@cardiomyopathyandme5970thank you for your reply! It really helped ease a bit of my depression knowing I’m not alone. And it is very comforting to know I can continue to do a lot of my favorite activities. Thank you, Sam! You are an inspiration for us newbies!
Sounds like we had similar experiences in how things happened. At the time I was a marathon/ultra marathon runner, and I knew something was wrong with my heart for around 18 months (symptons were changing/getting worse over that period) but no family history of heart issues and I had every test under the sun done. Got the all clear on every EKG/ECHO/PET/MRI/CT etc etc., doctors mystified (to the point I don't think they believed me that there was a problem). Eventually, my cardiologist asked me to wear a Holter monitor for 2 weeks. He got the Holter data back, called me, told me in no uncertain terms to get to the nearest hospital immediately. My Holter showed 22 VTs, longest lasting 15 mins with a peak heart rate of 444, over the 2 week period. I didn't know it at the time, but obviously I should've been dead. I got to the hospital not really knowing what was happening, they did lots more tests, then an EP study, and then I had dual chamber ICD fitted in March 2022 (I needed pacemaker too because of low natural heart rate). I don't really feel like I was given a choice on the ICD! It was pretty much you're getting an ICD or you'll die at any moment. Because I had dual chamber ICD my recovery process was a little different to yours because of different ICD location. So couldn't use left arm for 2 weeks, couldn't lift it above my shoulder for 6 weeks. Now on a daily basis I don't feel it too much. I'm still restricted in terms of not being able to lift significant weight above my shoulder on left side, but otherwise it's fine. I got my first shock in August 2022, so about 5 months after implantation. Very similar experience to you. I knew I was in VT a couple of seconds before, but I don't think anything prepares you for the first shock. It took a little while for my brain to work out what had happened and for my motor skills to kick back in. Mentally it was a reality check for me too. I think I had been lulled into thinking life was back to normal again, and then it was like boom, and everything changed again.
Very similar experience! I can relate to most of what you’ve said, not the same icd but many of the same symptoms. The shock is something else and I try to play it down a little as not to scare the people who haven’t been shocked, some of my family members also have icds that have never triggered so I just say it hurts a bit 😂. Keep battling, I’ve had four set backs with shocks etc but I’ll keep getting up and looking for ways to improve. VT ablation is the next stop, fingers crossed that buys me some symptom free time.
@@cardiomyopathyandme5970 Ha yes that makes sense! For some reason I hadn't ever truly contemplated what a shock would feel like, so I hadn't mentally or physically prepared for it. So the first time, I happened to be hiking with some friends, and my first instinct was that for some reason the person behind me had punched or kicked me, and I was thinking "who punched me?!". It took a couple of seconds for me to put it together, realise that it was a shock, and then I was able to gather myself ok and felt mostly in control physically. Second time was a double shock and I most definitely was not in any control 😂. I would say both times it took me a good 4 weeks or so before I felt physically "normal" again. I've noticed over time that it takes me longer and longer to recover after each VT episode. Good luck on the VT ablation! Endocardial didn't work for me, but then epicardial did (so far!). All of the data out there shows it's really effective at controlling the arrhythmias/VTs, so hopefully a positive next step for you!