adjusting to a defibrillator

Hello everyone! I had an ICD implanted in December of 2021. Since then I have tried to follow the doctor's guidelines for healing to get back to my usual routine. However my ICD causes me a lot of discomfort. In additon, it is progressively slipping down from where it was surgically implanted. I've seen the doctor and talked to them on the phone several times since December. They tell me that I'm so thin that there is nothing to keep it in place and the only way they can fix it is to do surgery again. I am currently doing treatment for Cardiac Sarcoidosis and have a supressed immune system so this is not ideal (it would not be ideal anyway). I'm just wondering if anyone else has had this issue? If maybe it got better with time? They told me I could get back to my usual routine after the ICD implant, but that couldn't be further from the truth.  The adjustment has been really hard. Thanks in advance for your thoughts and feedback.

4 Comments

Defibrillator discomfort

by Gemita - 2022-04-03 13:46:05

Dear Jules, Firstly I am so sorry to hear about your discomfort and movement of your ICD.   If you have a look under Q and type in move or pain you will find many posts to read on this subject. Many of us have had some movement of our devices and a small amount of movement can be normal.  

My pacemaker has moved towards my left armpit and can be uncomfortable when I am in certain positions.  I am also fairly thin and feel the “edges” of my device regularly.  A good cardiac surgeon with experience and care should have made sure that your ICD was sutured down adequately to limit movement of your device, but these things happen.  What to do about it?  Mine has improved with time.  I allowed myself at least 6 months to fully recover and to feel more comfortable, but some of us need longer, perhaps up to a year.   

I don’t know how best to advise you, especially if waiting a little longer is unlikely to help - only you will know how much discomfort you are in and what you are able to tolerate.  It sounds to me as though your quality of life is affected and I would therefore discuss all your options with your doctors as soon as possible, to make sure that if repositioning is needed it will have the best chance of succeeding.

Take good care Jules

defibrillator discomfort

by #Jules123 - 2022-04-04 17:20:41

Hi Gemita, thank you for your response. I reallly appreciate it!  You mention looking under "Q" and to type in move or pain to find other posts on the subject. Do you perhaps mean FAQs? I will take a look.

Again thank you for responding! It is nice to connect with others who can relate!

Best,

Jules123

No I mean look under “Q” - top right

by Gemita - 2022-04-04 17:55:49

Jules, no I mean just hit "Q" which should be top right of your screen and type in search box move or pain to read old threads.  I am not referring to FAQs.  You can also try typing into your main browser something like Pacemaker Club ICD movement and it will bring up a lot of Google links.

I found one such link which you need to copy and paste into your main browser to view:-

https://www.pacemakerclub.com/message/31305/side-sleeping-and-icd-movement

https://www.pacemakerclub.com/message/8170/pm-moved

I figured out it was the search bar ;) Thanks!

by #Jules123 - 2022-04-04 18:32:43

Thank Gemita! I figured out it was the search bar ;) and have read some previous posts.

 

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