new

hi all, 

I just got my Medtronic implanted last week and I'm adjusting to this new cyborg feeling. I'm 31 and experienced Sudden Cardiac Death (SCD) while sleeping on the beach with my partner. I ended up having open-heart surgery for a myocardial bridge unroofing, but my EP was still worried that I could be at risk of another SCD episode....after a long failed battle with insurance, who denied the dr. recommended subcutaneous ICD, I now have the transvenous ICD/PM. Its been helpful to read folks stories here, though I wish I found this before I got the procedure! I would have asked my dr. some different questions...and I would have advocated more for the implant to be in the muscle rather than on the surface. I did have a long conversation with my dr. about it as an option, but he ultimately discouraged me, saying the healing process is harder and each battery replacement is harder....but I'm super boney, especially in my chest, and the ICD/PM is very obvious, which is hard to be okay with. Before all this, I was very active, and my life includes a lot of outdoorsy things, like multiday backpacking trips, surfing, skiing, etc.....I'm super anxious about whether I'll be able to do these things again, especially with how much it sticks out. Looking forward to some support and advice about this from you all.... 

I'm also finding that I'm terrified of it moving or migrating. I see a number of posts about this and it totally freaks me out. I did tell my dr. that I backpack a lot, and for this reason, he placed it further to the left, right near the edge of my armpit...and I'm totally afraid it's going to slip into my armpit or down to my boob (which I have read happening to others!). Yikes. People always say this anxiety is a small price to pay for the freedom of anxiety of another SCD episode...but its still anxiety. 

Hearing positive stories from you all is helpful! And I'm very interested in connecting especially with other younger folks, particularly other women and outdoorsy types, who have adjusted to this. 

Thanks for reading & sharing your stories :)


3 Comments

New ICD

by AgentX86 - 2020-12-22 22:13:44

Wecome BNB.  We know you don't want to be a member of this "elite" club, but here we are.

One thing to remember about this club.  It's a self-selected group of people here (duh!).  A lot of the people who drop in have had complications but most pacemaker recipients just go on with their life without complications.  IOW, don't read too much into the problems you read about here.  They are unusual. 

The above said, it's very unusual for the suture holding the PM in place pulling out, letting the PM migrate.  This is pretty unusual.  Unusual enough that it's not worth worrying about.  If it happens, well, get it fixed but don't borrow trouble.  That's the bottom line.

It sounds like your doctor listened to you.  I rarely say this here because most come here with trouble and indifferent doctors but in this case, keep him! He moved your PM out of the way so your backpack straps will have less chance of irritating your PM.  Again, don't worry about it moving.  It's unusual.

I don't have and ICD (rather a CRT-P) so I can't say too much about what you're going through but my (#2) brother has an ICD and has had numerous "Jesus Jolts".  A stroke left him with a problem that a bump on his left side stops his heart and down he goes.  The ICD restarts his heart.  He's still living.  One of my other brothers (#3) had SCA while sleeping (in Europe on vacation).  Which one is better off?  Well, I'll (#4) take my PM (and CABG) over either but overall, my #3 bother left a wife and will never meet his grandchildren. 

I prefer to look ahead to a full life rather than look backwards to figure out how I got here (can't pick one's parents).  If I were at risk of SCA, you bet I'd trade my CRT-P in for -D in a second. Jesus-jolts, or not.  I'm not saying that there is no reason to be anxious.  Sure there is but keep everything in perspective.  If you have issues that you can't handle yourself, there are many therapists who can help.  This isn't uncommon and they do a very good job. 

Sorry, I'm not younger, a woman, nor outdoorsy.  ;-)  I do like my PM though.  I'm still here and actually feel much better than I have in years, probably decades.  Life is good.

PM not ICD

by ar_vin - 2020-12-23 13:30:41

I was implanted with a PM not an ICD but I'm just as active as you are - backpacking, climbing, hiking, running etc. Just give your body and heart time to get to used to the ICD and you'll be fine once you heal. It took me a good four months before I was almost back to my pre-diagnosis activity levels.You might lose some fitness and that will take time to recover as well. I'm more than twice your age - if I can do it so can YOU!

In time you'll forget you have a device in you. I know I don't think about it most of the time.

Almost an year and a half post-implant I've been on several solo strenuous multi-day backpacking trips at altitudes over 11000 ft.

Depending on your condition you may need some adjustement of the PM/ICD settings to suit your level of activity.

 

 

 

ICD placement

by islandgirl - 2021-01-02 12:37:13

My ICD is placed closer to my armpit, and I am able to wear a backpack.  They stitch the ICD down, and as the pocket heals, it shouldn't move much.  I do worry a little bit about the edge of my ICD, which seems close to the skin on the lateral side.  I also feel the wires just below my collarbone.  Mine will need replacing within the next 8-12 months, so will start discussing with my EP a deeper placement.  

I also had a SCA and the ICD has saved my life from another SCA and numerous periods of ventricular arrhythmias.  

 

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