New to having a Pacemaker!

Hi everyone! I'm Jaylynne, but everyone calls me Jay. I just turned 31 at the end of December 2022.
I've been having issues with my heart since 2nd grade and it wasn't until I finally found a cardiologist to get me one of the MyZio (external) devices to be able to figure out what's wrong with me! Anyway, my surgery was Jan 4th, 2023. So as of Feb 15th 2023 I am officially 6 weeks post op! Which as y'all know means I have the clearance to move/exercise......

However- I legitimately can not lift my arm even to shoulder level let alone above shoulder level, and today I used both arms to pick up my 33lb nephew and I'm noticing a lot of swelling/pain. I used to be a personal trainer and yoga instructor, as well as compete in CrossFit competitions. I don't currently have the desire to go back to CrossFit- but I really want to get back in shape building muscle and working on my cardiovascular health! I just feel like realistically it's going to take over a year to even feel semi "normal" with exercises....

I still can't wear sports bras/form fitting clothing/my seat belt over my shoulder (i have to tuck it under my armpit).......

In your experience, how long did that last? Because I can feel the whole pacemaker and it freaks me out (to say the least).... 

Where the incision is: the first 1/2 of it is raised up whereas the bottom 1/2 of it is flush with ny skin... is that normal? Also- considering just putting lotion on is highly uncomfortable how am I supposed to massage it to help break up the scar tissue- or should I not be doing that?

I know I'm still very new to this, and I'm being very patient and understanding with myself- I'm just wondering in other peoples experiences what happened with them so I can have an idea! 


5 Comments

New pacer

by Julros - 2023-02-18 00:48:08

Hi Jay, welcome to the club. I'm sorry you qualify to be here, but we are generally a fun bunch. 

First of all, everyone heals at their own pace. I assume you have already had a wound check and they would have told you if the raised up part looks abnormal. Wounds and scars take up to a year to remodel and shrink down.  They are red and puffy at first, but will strink down and turn white eventually. Trying to accelerate the process will not help and may delay healing. DO NOT RUB OR MASSSAGE YOUR WOUND OR SITE! The wires need fully seat and rubbing stuff into the incision will not help. I found that warm compresses helped with discomfort, others like cold packs. 

There is very little scar tissue there. I suspect much of it is fluid, that will slowly reabsorb. If you have the ok from your clinic I suggest some GENTLE stretching of your shoulder and chest. I saw a physical therapist for prolonged pain and swelling and he had me do exercises very similiar to ones prescribed after mastectomy. My first pacer hurt for a year (no bra strap for 3 months), but pacer #2 was pain free at 2 months. 

As far as exercise, start with walking. You may find your pacer needs to be adjusted to fit your activity level, so that it responds when you need it and to the level you need. If walking feels good, move up gradually to a jog at a comfortable pace. I would lay off any heavy arm or shoulder work until you are completely pain free. I don't know if you bike or swim, but just know that pacers are not great at responding to those activities, but a good tech will do their best to fine tune your device. 

healing

by Tracey_E - 2023-02-18 09:19:54

6 weeks is healed, but not really. It was 3-4 months before I was back to my old workouts and didn't have lingering soreness. Not saying it hurt that long, but it took a while before I could move without the occasional twinge.

It can take 6 months up to a year for it to fully settle into place, to get numb from the scar tissue that will build around it, for the scar to settle. 

A plastic surgeon did mine. She said to keep it hydrated with anything natural- vitamin e, aloe, cocoa butter, etc- just make sure whatever you use doesn't have preservatives or other chemicals. 

If you continue to have trouble moving your arm, ask for a few sessions of PT to get you started. It's likely stiff from not moving enough while healing. 

I did Crossfit for 10 years while paced. Nowhere near competition level, but I held my own among the over 40 mom set at my box. If you want to get back to it, you can. The only thing to watch for is if weights sit directly on the box or, if your box is close to the clavical, pressure on the clavical. So basically, front rack could be an issue depending where they placed it. Mine is lower and deeper so it was never an issue. 

It's normal to need to have it fine tuned if you are athletic. They send us home with a good guess. If you struggle with stamina, if your heart rate maxes out, if you get dizzy, go back and have them check the settings. This is normal. 

p.s.

by Tracey_E - 2023-02-18 09:27:27

I got my first at 27. I'm 56 now, still healthy and active. My oldest daughter is a runner, we are doing a half together next month. My youngest is a park ranger and all about the hiking and skiing. I didn't make it out to ski with her this winter but we're hitting a couple more national parks together in June. So far I'm able to keep up with both of them. As my ep told me, my joints will give out long before my heart. And he's right, I switched from CF to Orangetheory last year. I miss the big barbells and faster pace, but my joints are a lot happier.

Both of my kids were born after I was paced, if that's something in your future. The pacer was not an issue at all. Perfectly normal pregnancies and deliveries.

Recovery

by AgentX86 - 2023-02-18 16:16:05

I can't help you with the bra thing 😁 but the shoulder harness is a big deal.  The shoulder harness under the arm can be more dangerous than none.  It'll cut in where you don't want it to (under the ribs, right into the internal organs).  Anyway, I found one of those cheap faux sheep harness covers worked wonders. They're often available at Walmart or parts stores.  Amazon certainly has them.  Don't use it as padding on the PM site, rather adjust it so it's over your sternum and lifts the belt over the PM.

I used mine until my truck was totaled three years later (never bothered with one for its replacement). I certainly didn't need it that long but it was there. It did take eight months for the tenderness to go away, though.

The bra thing lol

by Lavender - 2023-02-20 14:05:40

I cut off the strap of a couple bras where it attaches to the cup. I then resewed it closer to the armpit. Still held everything together and didn't rub the skin over the pacemaker. 
 

I also bought a walmart seat belt cushion and still use it to lift the belt off the pacemaker area after the kind folks here were appalled in learning that I wore my seat belt under my arm🤣

 

DO NOT pick up 33 pd nephew no matter how cute he is. Let him crawl up in your lap on his own or hug him sitting beside him on the floor. One day he will be picking YOU up. 😘

DO NOT massage or rub your incision! No touching! 
Listen to mother, now😉

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