1st Post, significant problems

Hi guys,

I'm grateful to be here. 1st post. Got my PM installed on 14 March 2024 and have had a slew of problems and looking for advise:

Timeline:

- 1 March diagnosed with AV block. HR at night dropping down to 26 BPM (eek!)
-14 March 2024: Initial PM implant. 
-21 March: Wound check no problem. Felt great.  
-25 March: Lead falls out and is giving me muscle spasms in my diaphragm. No explanation as to why. I had been walking at my own pace with prior approval from my Cardiologist.
-26 March: The go in and put it back.  
-29 March: I have a big sneeze while laying down. I feel something move in my heart area, stand up, almost pass out, monitor symptoms, by the afternoon I'm getting muscle spasms again.  I go to the ER and they turn of the bad lead for the weekend.  
-4 April: I go in. They suspect it's a defective lead. They replace it. Then literally 10 minutes while in the recovery room, I have trouble breathing, they take X-rays determine it's attached, but not oriented correctly. Lost it's slack is what they said. They immediately put me under again and fix it.  

- I'm at home now and since being released, it's been hard to breathe if I'm doing anything more than laying down. Laying down I feel fine. Standing up is fine'ish. Sitting down or walking around makes me short of breath. Can't take more than 75% breath if that makes sense. I asked my Cardiologist he said it will take a few days because my heart is really irritated. Which makes sense, my heart is kind of sore and it feels like when I had pericarditis many years back (hard to breathe). 
 

Anyways, with all the problems I've been having I just wanted to get your guy's take on the matter. I have my wound check next Thursday, where they'll take X-rays and see if the leads are where they're supposed to be still... I have half a mind to go in to the ER and have them check sooner because now I'm paranoid. What if the lead is attached and it begins to heal in the wrong position and effects my ability to breath long term? I dunno. A lot for me to process. Any insight is greatly appreciated. Thanks.

8 Comments

ZOG

by USMC-Pacer - 2024-04-06 23:10:29

That is alot. I'm sure you probably have anxiety as well as your heart is majorly aggravated! Just relax as much as you can, you'll be fine. I've heard stories of leads coming out and others here will be along soon to chime in. I have had a defective lead however. It had to be replaced after 11 years <-much bigger job. I think you'll be fine now and soon you'll forget the pacer is inside you. You may need some adjustments over the next few months, but is the normal course with these, not what you've been through. Hang in there :)

Semper Fi brother!

by Zog - 2024-04-06 23:44:16

Thanks Devil. I appreciate that. I can't wait to get back in the gym and get active again.

What is an E.P.?

by Zog - 2024-04-07 01:38:41

I assume an E.P. Is a cardiologist or someone who specializes in pacemakers? My thought is if this time doesn't work, then something is wrong and I need another specialist to look at what's causing the real problem. 
 

I'm 35. I've heard that sometimes younger hearts can be "softer" and present more problems? Not sure if anyone has heard of that claim before.

EP

by USMC-Pacer - 2024-04-07 02:48:34

= electrophysiologist which is a cardiologist that specializes in the electronics of the heart. Great thing about this site is it's support from young and old with mounds of experiences. 

You'll be back in the gym and active in no time. Probably feeling better than ever as I suspect you've had something brewing for a while. It took me months before I went to my cardiologist with my block. What a difference after! 

I'd go now.

by crustyg - 2024-04-08 07:02:10

It doesn't make any sense to me to delay your lead-position-check CXR until Thur - unless you've already had a PA and Lateral - this latter is critical.

Unless you're normally close to breathlessness I think it sounds as though you have a pericardial effusion - best check for that is en Echo.

If this were me I'd be going to the ER right now.

I'd go

by Tracey_E - 2024-04-08 09:59:43

If you are having trouble breathing, I'd go to the ER to make sure everything looks good. Your heart has been through a lot so you might just need rest, but best to rule out anything new. 

Pericarditis

by Lavender - 2024-04-08 15:12:57

Having had pericarditis a few years before I got a pacemaker, I can relate. I agree to get checked sooner. Pericarditis was the most painful experience ever-in my life. God be with you as you seek comfort. 

Pulse oximeter

by RioTeresa - 2024-05-20 15:39:45

Hi Zog,

Sounds like you’re going through a rough time! I’m so sorry you’re dealing with all of this! Everyone on here has offered great advice. Breathlessness after having suffered pericarditis is nothing to take lightly. There’s always the possibility of complications, even a punctured lung. I suggest getting a pulse oximeter at the very least to be sure you’re getting enough oxygen. That may help you to relax a little at least. I pray everything goes well with your recovery and your lead stays in place this time. 

Take it easy & let your heart heal. ❤️ Let us know how it goes. All the best!

Teresa

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Member Quotes

I had a pacemaker when I was 11. I never once thought I wasn't a 'normal kid' nor was I ever treated differently because of it. I could do everything all my friends were doing; I just happened to have a battery attached to my heart to help it work.