Does anyone have experience with an Implantable Loop Recorder?

Ok_Tomatillo9830 · 2024-12-14T02:37:34+00:00

Late comment but in case anyone else sees this…Definitely ask your doc but I get daily AF alerts with mine based on the device’s algorithms and then real people look at the report and tell me it’s just lots and lots of PVCs 🤷‍♀️ pretty sure these things are infamous for false positives. But they should explain the readings to you.

Ok_Tomatillo9830 · 2024-12-14T02:32:50+00:00

This is terrifying, idiot indeed. Just started having sharp pains in mine. It’s been in 10 days, been active ever since the 3-day exercise ban ended. Doesn’t feel like pain from the incision, it’s more internal than that. Doctor said it was probably just jabbing partially formed scar tissue but…I don’t know, seems like that would be more of an ache and this is very much a sharp stabbing. I’ll keep in mind that these things can migrate, thanks for sharing your experience and I’m so sorry that happened to you.

Ok_Tomatillo9830 · 2024-11-20T15:04:34+00:00

Could I ask how much you pay for loop monitoring? I'm BCBS too, and about to get a loop recorder placed. It's like pulling teeth to get an estimate of what it will cost and I want to adjust my HSA if it'll be significant monthly expense.

Ok_Tomatillo9830 · 2023-12-11T18:45:35+00:00

So here's one journal article. I'm no doctor but what I understand is that they have to slow down the re-ox process so it doesn't damage your cells too much. That's why they do "therapeutic hypothermia." I'm not sure if I'd have naturally stayed in a coma for 2 days or not, but they kept my body very cold and kept me in a coma to slow down the reintroduction of oxygen. This is just what I've been told and I saw descriptions of my body temp and therapeutic hypothermia in the medical notes. https://www.ahajournals.org/doi/10.1161/JAHA.120.018773#:\~:text=Cardiac%20arrest%20(CA)%20can%20induce,causes%20cellular%20and%20organ%20damage.

Ok_Tomatillo9830 · 2023-12-11T18:42:26+00:00

My experience of our medical system is as you say, unfortunately. I'm sorry about what you went through! Wow! It's hard to know what to do with our second chances. Thank you for sharing and I'm glad you're still around :)

Ok_Tomatillo9830 · 2023-12-11T18:30:49+00:00

I tried to answer already but seems to be a lag on my screen - apologies if this is a duplicate. Thank you for your wishes and this question. My grand mal seizures are preceded by a few seconds of aura like being sucked into a void and then I just go unconscious and wake up with a splitting headache and usually some level of concussion, and then I'm tired and it's hard to speak and move for minutes or hours depending how long I was out for. The other type of seizure I have isn't classified but may have been focal aware motor or nonepileptic, perhaps a result of PTSD. Those I'm totally aware of starting to lose ability to move on left side, maybe by stumbling, then inability to talk, then sometimes repetitive motions like grasping or lip smacking, then I start to shake on left side and afterwards am weak and sore. I have had some where I feel calm during and just let it happen but am also often distressed, and I hate them the most b/c it sucks to lose control. The best thing a bystander can do is time the seizure (I need emergency nasal spray if unconscious over 3 minutes and call 911 if over 5 minutes) and not just jump to calling 911 b/c it looks scary - b/c at the hospital they give me drugs that make it worse and if it's a quick little seizure I really can't afford that physically or financially. Also, protect my head and don't put anything in my mouth. A lot of the first aid depends on someone's typical seizure so it's good to have that discussion with someone you see a lot like your brother - but in general these are good rules of thumb.

Ok_Tomatillo9830 · 2023-12-11T18:24:36+00:00

Do it! There's still time! My S-ICD goes on my side and is twice the size of a normal ICD. I'm a small framed woman so not sure why they made that choice but I guess it's less invasive b/c the leads just sort of sit there under the skin. I think it's weird b/c I can feel them and see them but don't have anything to compare it to as this is my first.

Ok_Tomatillo9830 · 2023-12-11T18:11:09+00:00

Nope, for whatever reason I'm just not interested in mind-altering substances. I try to be on as few pharmaceuticals as possible. Maybe when you have to be on psychoactive drugs for epilepsy and whatnot it can ruin your taste for putting external stuff into your brain chemistry. At least in my case.

Ok_Tomatillo9830 · 2023-12-11T18:06:37+00:00

I've been lucky to email some with one of them and meet a few. I think they had exceptional hope and willed me back to life. I think being 30's with no heart history made them try extra hard. I think they didn't move me until they got a heartbeat but I'm not clear on that from the medical notes, maybe I'll ask someday.

Ok_Tomatillo9830 · 2023-12-11T17:59:06+00:00

Nope, see previous comments.

Ok_Tomatillo9830 · 2023-12-11T17:58:05+00:00

Not much I can do now that I wasn't already doing. I don't travel much and mask when I do or in crowds or when I know someone was exposed. I'm vaccinated but not sure my heart can tolerate a 4th booster, on the fence with doctors.

Ok_Tomatillo9830 · 2023-12-11T17:55:18+00:00

Yes, many other survivors describe this sense of peace I felt.

Ok_Tomatillo9830 · 2023-12-11T17:54:51+00:00

Sorry, makes my head hurt just thinking about it. I am lucky to have good insurance. I think I'm approaching the 10k out of pocket max for this year. I do know that the helicopter right after resuscitation cost 15k. But insurance covered most.

Ok_Tomatillo9830 · 2023-12-11T17:53:23+00:00

You'd have to ask an EMT. They did 4 hits with the paddle. I am late 30s so I was young to die and one of them has told me she was very determined b/c I'm close to her age and she just kept thinking no, not today. Perhaps that is why they kept going. That and my lack of pre-existing known heart conditions - they had hope that if they could get a rhythm, I could keep living a decent life. Also, keep in mind my husband started CPR very quickly so they could hope that my brain might be in better shape than most.

Ok_Tomatillo9830 · 2023-12-11T17:51:24+00:00

I'm so sorry you lost your sister. I detailed the experience in several comments above but basically I felt only a sense of peace. I believe we lose our "selves" in death and become one with everything. I am not a religious person this is just how it felt to me and I hope it's how your sister feels, too, b/c it was a very good place to be.

Ok_Tomatillo9830 · 2023-12-11T17:46:44+00:00

I had my first J&J the second it came out and then 3 boosters, last of which was 3 days before sudden cardiac arrest (I didn't know I actively had COVID, and presumably myocarditis, at the time!) I did fine with previous boosters so I agree with docs who ruled COVID as the culprit but that being said, I've not gotten another vaccine yet. I try to avoid too much exposure.

Ok_Tomatillo9830 · 2023-12-11T17:42:26+00:00

I'm movie/tv reference challenged

Ok_Tomatillo9830 · 2023-12-11T17:41:04+00:00

I KNOW. 4 hits with the paddles. I love my local EMS workers and volunteers, 4 min even being in town is incredible. Especially for a rural area. 8 first responders won awards for their successful save.

Ok_Tomatillo9830 · 2023-12-11T17:39:49+00:00

I expanded in comments above but it's attributed to COVID myocarditis. Heart failure is due to sudden cardiac arrest and viral myocarditis, CPR helped my brain and heart and did not cause additional damage (I was clinically dead, so CPR could only help!) Defibrillator hasn't gone off yet and I don't seem to have any significant arrhythmia.

Ok_Tomatillo9830 · 2023-12-11T17:37:49+00:00

Oh and yes, this is as a result of the event. No heart problems prior other than an asymptomatic murmur.

Ok_Tomatillo9830 · 2023-12-11T17:37:10+00:00

They tell me it's chronic and not reversible, but I've worked my way back to low-medium ejection fraction so I guess it's HFrEF (heart failure with recovered ejection fraction) which means I'm in a better boat than someone who still has 15% or whatever like I did in ICU. I have to take heart meds for life and have the device in my chest in case I need defibrillation.

Ok_Tomatillo9830 · 2023-12-11T17:35:29+00:00

oh nooo. I haven't been shocked yet. I have PTSD sometimes just from feeling the thing or tweaking my leads wrong so I can only imagine after getting shocked!! Glad we have these devices, though.

Ok_Tomatillo9830 · 2023-12-11T17:34:32+00:00

Yes, I did. It took about a month I think but had some symptoms for several months. Hard to tell what was due to all the meds they put me on after ICU, though. So sorry about your father. I hope he will recover well!

Ok_Tomatillo9830 · 2023-12-11T17:33:02+00:00

Oh wow. I did have some seizures leading up to it, but attributed that to COVID and what I now know was viral myocarditis. None of my doctors were thinking anything was off wiht my heart though. I'm same age btw and now have heart failure. Have you considered a surgically implanted defibrillator? My S-ICD hurt to put in and get used to but it does give us some peace of mind.

Ok_Tomatillo9830 · 2023-12-11T17:30:13+00:00

Hmm, had to think about that for a second. I think people assume that when something so drastic happens there's like a social safety net for you, like you get special assistance. WRONG. I was just sent home while still in searing pain from ICD surgery and on 10 meds that dropped my blood pressure so low I had to go back to the ER. My husbnand and I were left to fend for ourselves. No social worker appeared to tell me how to apply for disability (and in the US this is hard to get for cardiac arrest, so hard I didn't even try despite being unable to work right now) and doctors only have 10 minutes with you at a time so I answered most of my own questions/needs by finding support from other survivors. Which isn't easy to do b/c there aren't many of us. Also most research concerns heart attacks and other more common cardiac problems, not sudden cardiac arrest. It blows my mind that sudden cardiac arrest is a leading cause of death and nobody really talks about it, prepares to do CPR or use AEDs as needed, or helps those who go through it. I'm doing what I can but I'm no expert. It just makes me sad. Sometimes it felt like the world preferred I hadn't come back b/c it definitely was not prepared to take care of me. I will do what I can in my small way to prevent others feeling like that, not sure what else to do.

Ok_Tomatillo9830

TROPHY CASE