hello everyone
I am 58 years old have just been diagnosed with hypertrophic obstructive cardiomyopathy.
I had an ICD implanted 2 days ago. I was wondering if anyone has any experiences with this , very sore and very tired , feels like a lead weight on my chest.
How long does it take to adapt and any tips for the first few days.
Looking forward to hearing from you all.
Gillian
I found it uncomfortable for a few days, and difficult to manage not lifting the arm for a couple of weeks, cautiously for six weeks.. Once the wound healed, I more or less forgot about it. I assume you were given relevant information about driving, and notifying the DVLA about your device. This was easy to do and caused no problems.
I carry details of my device and contact no.s in my phone case just in case...
Thanks very much . That’s great to know
Dear Marking
Thank you for your first post and a very interesting one at that.
Reading between the lines { correct me if I’m wrong } but you have been on a whirlwind of a journey and have ended up back at home with time to reflect and wonder how/what and why it has all happened.
Add to this the pulling and weight of an amazing piece of equipment that is now a very important part of you.
The days will pass and soon you will forget for longer periods { after family and friends have constantly reminded you } that it is there.
Follow all the instructions that you have been given and be a good girl, this helps the unit to settle in, scar to heal and the swelling to go down.
I’d be lying to say that it wont be odd to start with and still mine tells me now and then that its here, I still have a slight numbness , but none of this compares to having the knowledge that I have a good chance of survival if I were to have another heart attack.
You will find your own path to comfort living with it, while it and you heal.
I found a pillow under my arm while sleeping helped, other find a nice tot of whisky helps with the sleep, we are all different but many of us are travelling the same path.
Good luck with it all and please keep us informed.
Dear BlueMany thanks for your reply, you understand exactly how I feel.
The soul has to heal as well not just the wound and the mechanics .
Have a great day, we have been given a second chance.
Hi, 2 days is very early days and as was explained to me implanting the ICD does involve a fair bit of "trauma" to the muscles in the immediate area of the ICD. After a few weeks you should often forget that it is there. Having said that I have had complications as I had a frozen shoulder as a result of limiting movement of my left arm \ shoulder. I also have a blocked vein (superior vena cava) that has resulted from the ICD which is causing problems but from what I read these complications are very unusual so hopefully in time it should settle down. All the best
Hi, I have had my ICD for 8 weeks, I have now only think about it at night when I do not lay on my right side. Lost the use of the car for 6 months which is a blow, now walk to the local shops Not sure yet if want to get my licence back, not happly about having a shock when behind the wheel. Good luck.
Hi GillianI had an ICD put in April 2017 after being diagnosed with heart failure. I had an infection in the wound and had to keep going back for the dressing to be changed until August. Mine is on the RH side as I have had breast cancer and have a reconstruction. I was black & blue for about 3 weeks, and sent home being told to take paracetamol. Which did nothing so I took ibuprofen as well which did help alleviate some of the pain. But I was v uncomfortable for about 5 days. Had to take paracetamol at night to be able to sleep. Also learnt to sleep on LH side or flat on my back as told not to lie where the ICD is.
I did notify DVLA and they have noted it but did not cancel my licence. I didn’t drive for about 6wks.
I always carry my card on me just in case. It’s fun & games going through some airports and the security at concerts!
Hope you feel better soon.
Fiona
Hi. I had an icd fitted at beginning of June and had a third lead 3 weeks ago so know what you’re going through. It’s tough physically and emotionally because it’s a shock having to have something like this but we know it’s there to help us. I joined this group because it’s good to feel that you’re not the only one going through it and I have found it helpful to read positive comments from other people. (I’ve never posted on Facebook or anything before so it’s another new experience 🙂. I hope you’re doing ok.
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