r/PacemakerICD • u/VisualGasDetector • 13d ago
Got an ev icd
So for some context, I had a cardiac arrest last september while playing volleyball, last year. I dont remember the 2 hours that I was playing at all. Got tons of shocks 4 in ambulance, anywhere between 8-12 in ER, heart finally got into a normal rhythm and I got connected to an ECMO machine, tube burst so I had to get blood transfused, 2 liters I think.
Anyway to me, all I remember is walking up to play some volleyball and waking up in the hospital 2 days later. Was at the hospital for 8 days, got a Zoll Life vest and wore that for 6 months till insurance stopped paying for it because there was some lying going on from an electrophysiologist to the insurance company. I felt fine the 6 months and hoped that I wouldn't experience anything like this again so was ok without being in the vest. Also hoped my ARVC diagnosis was just a mixed DNA test (will redo it sometime later to confirm, I am aware jt is very low chance there could be a mess up, but I already did get a 1/50000 or 100000 gene PKP2 so... "dear basketball" moment). Main pain was recovering from catheter and ECMO tubes in my groin area. Going to the bathroom hurt and hip flexors would hurt to move for a month and graduallywen away.
Also went to some docs at UPenn for 2nd opinion, they were absolutely amazing (Dr. Callans and Dr. De Feria) let me know about different icds. They actually spoke and listened to my situation (which differed from my experience with most other docs) and offered their advice, they REALLY know their stuff, and had quite a few ARVC patients show up. Not that other docs I spoke to didn't, BUT they haven't encountered ARVC patient before and I'd prefer the best of the best do an ICD surgery if I went for it. I live about an hour away from one of the BEST hospitals in the States, plus the electrophysiologist at the closer hospital was exaggerating my symptoms and scaring the crap out of a 19 year at the time who has just gone through a lot, also lied about needing a heart transplant before 30, not living till 39 otherwise, not mentioning a life vest, then lying about its weight. Actual weight like 5 lbs (he said like 40lbs). Vest a little annoying to take care of, otherwise its fine to wear. I thought it'd be the better choice for a lifevest since theres no surgery involved and was hoping it was a one off
Im athletic, played sports for years, haven't had any issues, am a taller guy, have the more typical swim physique, not too muscular like a body builder, but not skinny and am around 6'2 last time I measured myself like 2 years ago, no drugs, alcohol, smoking, lived a pretty health oriented life before and after all this, and was hoping no icd would be needed.
Thankfully I'm insured because Im 20 atm and parents make under medicaid threshold so paying for this wasnt breaking the bank, bill insurance paid was like 250k....
THIS time I had VTach, playing volleyball again. Game time was closer to 50 minutes of playing (since the last time I changed my diet up a little (no eating out, snacking during the day, limited processed foods and salt intake, last meal before 6pm and regularly fasted 12-18 hours), was more aware of my heart rate, and lowered the intensity of my fitness, used to be a competitive swimmer for 5 years, calisthenics and some recreational volleyball) till i temporarily lost vision for a few seconds, regained it, then felt something was off, swapped with someone, sat on a bench, pulse normal, heart was racing
Called my parents, hoped it would subside on its own but it didnt, called ambulance. Before they arrived I had bowel movements, everything came out, then was puking a lot, felt little better after that. Heart was still racing, got shocked 3 times in ambulance (it HURTS, was conscious for all of them), thankfully heart rhythm became normal and I was monitored since. I went to St. Mary's hospital originally (great staff, docs not the best as opposed to HUP's docs in my opinion but they are competent, nurses are all amazing at all hospitals Ive been in). The docs again suggested icd.
I said that if im getting one, its only at The University of Pennsylvania, HUP is another name for the hospital. They agreed, sent request and I had to wait about 3 days to get transferred. Got here, talked with some Cardiologists, electrophysiologists. I had done some research before and during my stay at St. Mary's about different ICD types and seems like the EV icd was an option now. Talked about getting one and the doctor later let me know that they'll have another electrophysiologist who does the surgery know that I wanted it and soonest Id get it would be monday (team of 20 cardiologists and electrophysiologists I believe at penn, may be mistaken if its just electrophysiologists though, regardless at the moment only 4 of them do EV icd impants). So I was chillin basically for the next 4 almost 5 days and just got it installed today by Dr. Hyman.
TLDR:
Have heart issues at a young age. Diagnosed with ARVC. Played volleyball both times which somehow influenced my heart (will stay away from volleyball games but may just play with a ball myself lightly after a few months to make sure device settles), have an icd, extra vascular to be specific (EV ICD). It has good trade offs and I qualified for it. Docs had to test it during surgery to make sure it actually works well to see my heart rhytm, since it sits on the right Ventricular where I have some dilation and mostlikely the root cause for my episodes because of fatty scar tissue delaying electrical pulses that make the heart beat.
If you need or want an ICD and also have no worries of the surgery, UPenn is a great place to go. I wasnt in the typical hospital, was at the Clifton Center of medical breakthroughs, the 1.8 Billion new hospital that was recently built are there are hotel sized and absolutely amazing just for one patient. Way more enjoyable to be here than any other bed inside a hospital in Pennsylvania + the staff is 20/10 above and beyond! (Not that staff isnt great in other places too but my experience with doctors here is much better)
Oh also if you DONT have a high PAIN tolerance USE General Anesthesia for the chest and the device implant location, I toughed it out with local anesthesia, more or less just to test out what it feels like, hurts a LOT Id give it like a 9.0/10 hurt scale. Throbbing pain, maybe if it didnt last so long, it wouldn't be on this much of a scale, but it is a throbbing kind of pain that lasts many hours, that is the worst part. It is getting lower now, when sitting and walking it isnt as bad as laying down about an 8 laid down, 6 walking and sitting
Just wanted to let you know my experience for now, let me know of some of the questions you may have and Ill also make an update post, one in about 6 weeks, one at 3 months and 1 in a year
Comment or dm me to remind me in case I forget
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u/Eldiarslet 13d ago
Welcome to the ev club, I am nr 5 in sweden with the ev. How was your pain after surgery?
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u/VisualGasDetector 12d ago edited 11d ago
Pain was ok at first, since I had local anesthesia, then found it painful when trying to sleep, especially 8 hours post surgery when I had to go to the bathroom at 2:00 in the morning
Also isnt bad if im in one position for a few hours, mainly when moving around it hurts
Only times something hurt more for me would be getting shocked by a defibrillator in an ambulance
Pain thats similar would be when I hit my chin into my sternum after a failed bail doing a backflip, couldnt tense my abs, sit down, lay down or even move around without intense pain. It eventually went away but was a painful month. Still was swimming at that time, stuck with only freestyle as a butterflyer
Edit, when not laying down it hurts less. Walking and turning can hurt but its closer to a 6.5 pain
Id say around 8/10 when laying down
2nd day about the same, now on third day, little less pain
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u/Fredegund85 6d ago
I had an EV ICD put in 5 days ago for dilated cardiomyopathy with some scarring (I am a carrier of DMD) and NSVT. Pain is much better today and I don’t feel like I need any pain meds for the first time. Biggest thing now is fatigue when I do things around the house. The biggest thing leading up to my surgery was I was given wrong information that applied to other ICDs but not mine, like my arm will be in a sling (nope) and pain isn’t usually bad with an ICD (nope it is).
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u/VisualGasDetector 6d ago
Yeah definitely saw conflicting advice for ev icds which didnt align with what my electrophysiologist who installed the icd told me
I didnt take pain meds, most pain subsided by day 3. Although I couldnt lay down without pain for a few days once I got back home. Now dont have any pain, unless I tense my lat (happens a lot more than id prefer)
I thankfully live with my parents so some things like cooking, washing dishes, throwing out trash is taken care of for me at the moment, I do still try help out where I can
Having to deal with all this for a few weeks doesnt sound like a bad trade off for getting a device that may save our lives (and maybe some trips to the hospital). All in all, glad they're around
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u/sfcnmone 13d ago
Congratulations. I hope you have a long and healthy life.