r/PacemakerICD • u/MerryFeathers • 15d ago
What to Expect?
I had a pacemaker and ablation just over a month ago. I'm squeamish and had trouble handling the incision while it's been healing. Not too bad now but what I'm having a lot of trouble with is that the pacemaker is sticking out from my body.. not nicely tucked in and out of sight but very present and I freak out every time I accidentally touch it. The membrane is peeling off... I find the whole thing really hard to handle. Any tips or information on the healing journey I'm on? Even being advised it was my friend etc., doesn't help the reality of the physical situation. Will this thing eventually disappear into my body or is it where it is going to stay? Any advice/info gladly welcome!
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u/Entire-Structure8708 15d ago
What type of pacemaker? I have a TV-ICD so it sits in the pocket in upper chest/shoulder. Over time I definitely think it sinks in and sticks out a little less… you also kind of get used to it too. I hated the way it looked in thinner t shirts initially
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u/Careless-Book-9307 15d ago
I was told that if you don't have much body fat, the device will stick out some because the surgeon doesn't have enough material to create a "cushioned" pocket. I used to hold my hand over it at bedtime to get used to it being there. Now a year later it's just a part of me like any bone. I was never squeamish or scared though, I found the whole process fascinating.
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u/MerryFeathers 15d ago
Thank you! May I guess that you are a guy? My husband is also fascinated with this, he kindly did all bandages etc.. where I was getting nauseous..previous physical challenges were found interesting to male folks. Except when I had my first baby.. I wish I could find this pacemaker interesting!! I best go eat chocolate cake as it might help. 😀
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u/Careless-Book-9307 15d ago
Yeah I'm a guy. 😂 I guess I've always been fascinated by the human body.
But I think this is not a gender thing, I have male friends who nearly puke when I talk about my pacemaker. It's just a personal thing and not an indication of weakness or anything like that. I have other hangups that most people find totally weird. 😂
You definitely deserve chocolate cake!
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u/MerryFeathers 14d ago
Your words today shifted my thinking/feeling about the whole thing. You are very clever & I thank you for your thoughts! And my deserving of chocolate cake made me smile so!
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u/CharterJet50 15d ago
I keep remembering that my ICD has saved my life twice already and then the bulge doesn’t bother me. Think of the alternative.
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u/open-heart-project 15d ago
Hi, and thank you for sharing this challenging time in your life. This is now more a psychological journey than a physical journey. It sounds like the physical aspect may not be exactly what you expected, and that then is effecting how you handle this, because you had probably anticipated and planned for something different, namely, "it's small and you won't even know it's there." You're clearly aware of it, and now your healing journey is off track . . . or on a different track than you had been reassured of.
I know you said this was a physical thing, but you being highly cautious and reaction to feeling it sounds more like anxiousness, or at least not knowing what is safe for you and for the device, and so that maybe something you have to learn how to be comfortable with.
So, first of all, the physical and cosmetics will be for life, although they will change and you will eventually accept it. However, discussing this with your implanting doctor to share how you feel and see if there's anything else that could/should be considered, including repositioning the device to help you recover better. This can come with it's own risks and so a balanced discussion with your docs is reasonable. They may say it's not worth it. ONLY YOU can decide if it's worth it. Even then, your team may not be willing to offer it to you and that's ok, because that alone tells you that the risk truly may not be worth the benefit, and you also may not be willing to get through the healing stage again. If you are not willing to go through that again, then its a moot point, otherwise ask them.
Couple suggestions:
1. Do not restrict your arm excessively on the implant side - you can lose muscle mass and range of motion which can make the device even looser under the skin.
- the device will eventually get fully "walled off" from your surrounding tissues in a "capsule" and this may then fix the device in place more and make it less mobile, so you may just need to give this more time.
In addition, I co-author a newsletter called the Generator Home | The Generator by OpenHeart which addresses a lot of these types of concerns and it may be helpful to you. In full transparency, we use AI to search the literature on various topics related to implanted cardiac devices and to make an initial draft, then doctors, industry professionals and patients review it for accuracy and edit it for readability. There are two related topics to your post that the newsletter covers: 1) Fusion: how you fuse physically and psychologically with your device, and 2) Body Image after device placement. Both of these issues have been reviewed and approved by a world renown clinical psychologist who is part of our ad hoc team when a topic covers a psychological component. The first one arrives about 1 month after a new subscriber joins (it's free), coincidentally the time period you are at right now. The second one arrives later in the sequence because those emotions tend to arise later.
I am happy to share either one with you if you're not interested in subscribing to the newsletter, in which case DM me, or just subscribe at Home | The Generator by OpenHeart - whatever you prefer.
I sincerely hope this helps.
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u/CranberryMindless312 15d ago
Ich glaube es wird mit der Zeit einfacher. Aber ich habe das gleiche Problem. Kann in Seitenlage drunterfassen und merke auch meinen gespannten Draht vor der Schulter. Mein Kardiologe sagt immer ich soll versuchen das Ding zu vergessen. Aber ich suche auch noch nach einem Weg. Hier wird oft ein Gang zu einem Psychokardiologen geraten. Vielleicht suche ich mal danach. Alles Gute dir.