I'm getting a biventricular pacemaker / ICD. What do you wish you had known before your procedure?

I am a 46 YO woman who started reading your forums when I was diagnosed with Idiopathic Dilated Cardiomyopathy.  I was hoping that I would respond to medication, but I haven't responded enough.  I'm getting a biventricular pacemaker / ICD in less than two weeks.  Your posts have helped me adjust to the idea, but I'm still not 100% there yet.  (I know intellectually I need this, but it's hard when I don't feel sick or impaired.)

What do you wish you had known before your procedure?  Any words of advice?  And am I going to be able to feel the pacemaker once the wound heals (I mean, in the sense of feeling it working, notice a difference in my heartbeat, etc?)  (Right now I have a normal heartrate so I'm not anticipating suddenly noticing my heart rate going from 30 to normal.)


4 Comments

You'll do great!

by RedRocksGirl - 2019-04-30 18:11:18

Hey! Welcome to the club! I was diagosed with heart failure a couple years ago and also had Dilated Cardiomyopathy on my diagnosis until I got my first biventricular pacemaker/ICD this past January 17. Now my diagnoisis is just heart failure - and we're working on that, optimaistic that the ICD and meds will get my ejection fraction back up in the normal range.

I had 4 major symptoms that were getting progressivly worse: constant chronic dry cough, shortness of breath, could feel EVERY. SINGLE. HEARTBEAT. (and they were all jumbled up and so forceful and uncomfortable) and had and could feel fluid in my left lung, especailly when I was laying down. My implant took place later in the afternoon on a Friday, Saturday morning I woke up about 6 am before the nurse came in and all four of those symptoms were totally gone. In fact my heart was beating so relaxed and quietly I felt like it wasnt even there any more.  It was wonderful! 

There were days up to then that I would have said i didnt feel bad, but I feel SO much better now that I realize my really good/normal days were still not great like they are now.

I got on this site before my procedure and it was super helpful. Mine was placed subpectorally and I heard that positioning was a more painful and slower recovery so when I experienced that it wasn't as big a deal.

I was surprised that the only pain meds I needed were Tylenol and only for 2-3 days, and not even around the clock.

I think one of the biggest surprises was for the first week and a half to two weeks, everytime I sat up from a laying on my back or reclined position I felt like the ICD was a 50 pound bowling ball on my chest, pulling its weight forward. (Later I read a couple other comments on here describing the same thing so apparently I'm not the only one) But I couldnt really feel it inside of me after that.

I just had a second surgery, 2 1/2 weeks ago because the suture holding it in place broke so they took it out and repostitioned it up on my chest below my clavicle. Again it felt heavy at first but now I dont even notice that its there about 95% percent of the time.  Just still a little tender around the incision site. (I wouldnt worry about a broken suture, mine was because I use forearm crutches to walk with and the pec muscles are what I use with each step so probably too much action muscle wise where the ICD was located.)

I was also a littel surprised how sore my left shoulder got sometimes, pain actually referred back to my shoulder blade at times, but when your arm is taped down in a particualr postition for a couple hours during the procedure that can sometimes be expected. At 6 weeks you're usually cleared to lift your arm above shoulder height, but I didnt have near my full range of motion back till later. I did not use a sling after the procedure.

My scar was very small/thin but I opted and was cleared to use a silicone scar cream on it. I'd used it years ago an a couple of other surical scars and it did a great job flattening out the scar and fading it out. It's called BioCorneum. It's a silicone gel and also has an spf of 30 to protect it from sun damage. Its a little pricier than some others but recommended by a surgeon I had and the results were great. Both procedures my EP used the dermabond/liquid skin stuff to close the incision, which the first time around didnt come all they way off till I was 6 weeks out. I think it really helps as far as risk of infection and just the over all appearance of the scar after, you have to wait till after all that comes off before you'd use something like the scar cream.

I didnt have any bruising when they put the ICD in, and there was really minimal swelling both times, but each day it's settling a little more and the little swelling that there is (most people including myself wouldnt even notice it) gets less and less.

Overall, its a much easier experience than I thought it would be, especially having to do it twice in 3 months. I feel better and can't wait for more of the healing to take place so I can get back to "the regularly scheduled program".

Best of luck to you! 

 

 

what...

by ROBO Pop - 2019-04-30 19:46:49

I had what I'm sure was a brilliant response, but by the time I got through RedRocksGirl's response I forgot what I was going to say...for that mstter what was the question again?

You will be just fine!

by BiggKev - 2019-04-30 21:43:39

I am 2 weeks in with my ICD.  You do feel the additional weight as you adjust to having the device in your chest. Besides the soreness and the tightness you will feel afterwards, which by the way is normal at first and gets better each day, I really dont notice it. In my case, I need the ICD to prevent deadly tachs that could not be addressed with a cardiac cautherization. My pace is fine. I no longer have an irregular heartbeat which I have had for decades, which now effects me as I get older. As far as my sutures, they seem to be intact and not ozzing or painful to the touch...I see my Dr. in 2 days for my post surgery follow up. What you will have issues with is keeping that left arm from going over your head. It is really tough for me as I am left handed.

Thank you for your responses

by Jo S - 2019-05-02 14:51:57

I really appreciate you taking the time to share your experiences.

 

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