New ICD fears

Hi. I'm brand new to this forum and a new patient to an ICD. My ICD was fitted just three weeks ago and obviously I get concerned about all sorts of things. I'm hoping some nice soul will help me out.
1. My ICD seems to be more prominently close to the surface today than it diid yesterday. I inadvertently moved my arm a bit too much last night in bed and now I feel more aware of my ICD - is this normal?
2. How possible is it that by moving my arm too high that I have dislodged something - god forbid its one of the leads.
3. I seem to be more conscious of my heart beat than ever before, especially in bed !!!
4. I have read various things on the net about inappropriate shocks. How likely are these and can they be caused by anything, i.e., shop detectors, etc.
5. My post op follow up is after 4 weeks at Harefield - Does that seem like a long time ?

I realise that as a newbie that I'm probably more paranoid than most but a little pacifying would be appreciated.
Kind Regards
N

8 Comments

New ICD

by Brenda Price - 2013-11-14 07:11:30

Anxiety is common to all of us with a new device first time and with each change. Your ICD will become more prominent as the swelling goes away and most of us do not dislodge leads but we all stress about it for awhile.

Feeling the heart beat is not that uncommon. I have been paced for 25 yrs and still feel the pacer at times but it dies not concern me.

Inappropriate shocks do concern all of us with ICD but we do not hear about all the people that do not get them.I am on year 7 with an ICD and have never been shocked.

Make a list of questions for the post op follow up and if you still feel you need attention call and talk with the Dr. or pacer clinic

three week ICD

by Jane1 - 2013-11-14 08:11:59

1. Sometimes they can move around in the pocket slightly, not unusual. Do not try to turn it or move it. Call your clinic and let them know. They may want to check it out.
2. it is possible to dislodge a lead by moving your arm too high. leads can be repositioned or replaced if caught early. The only way to tell if you dislodged your lead is to have your ICD interrogated. If you have a remote monitor and it is working and plugged in it should detect if the lead is dislodged as the measurements will change.
3. More conscious of heart beat. You may notice the pacemaker working. Take your pulse when you notice this, record it and let them know you feel your HR when you are in bed.
4. Inappropriate shocks can happen. If you mean metal detectors not a big risk. Read your booklet and it will tell you what can interfere with the ICD. Chain saws, Arch welding, leaning over running motors are no nos.
5. Post op checks where i live are usually 6 to 8 weeks

Write all you questions down so they can answer them when you go to clinic. Often these questions can only be answered by someone who knows how your device/pacemaker is set up for you. Settings can vary quite a bit depending on you own heart rhythm needs. It is normal to be concerned when it is all new to you. You best bet would be to call your device clinic if you have concerns.

Hope this helps.
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New ICD

by Marie12 - 2013-11-14 09:11:03

You have gotten some great advice from Brenda and Jane. I can't add anything new to what they have said. I can say that everything your are feeling is normal. I wasn't aware how prominent the ICD would be but you do get use to it. I was only implanted in early July and it has only been these past two weeks that I have begun to feel that my ICD has finally found the spot it wants to be in permanently.

Every day is an adjustment and your are not being more paranoid than most. We hear more frequently from those that have been shocked but my EP has told me it is more common to NOT be shocked. If you come across something that you think might shock you and are not sure, check it out with the manufacturer. I just found out today that my Dentist will not use ultra sonic cleaning because of my ICD.

I love hearing from some like Brenda who has lived with an ICD for seven years and not been shocked. Always makes me feel a little better.

You are at three weeks from implant which is tough. Trust us when we say you will feel very different in three to four months. Give it time and welcome to the club.

By the way - my first appointment after implant was eight weeks but was given the opportunity to go earlier if I felt it was necessary.

Fear Not

by Grateful Heart - 2013-11-14 11:11:16

Welcome to the club. All your concerns are normal, but you will be fine. I also have an ICD, 5 years next month and I have never been shocked. However, think of it this way, it's good to know it's there if you ever need it.

All good advice above. We've all accidently moved our arm over our head without thinking in the beginning. After 3 weeks, your leads should be pretty well embedded by now, so if you feel good I wouldn't worry, but still follow the precautions from your Doctor.

My device still sticks out and it can shift when doing certain exercises. As the swelling goes down, you may notice it more but it takes a few months for it to completely settle down.

You should do a search at the top of this page, right hand side. Search for.....some tough love for newbies.
It was written by a highly regarded member of the club, Donr. I think it may help you.

If you have any questions.....ask away! We've all been there.

Grateful Heart

Give yourself a chance

by Theknotguy - 2013-11-15 06:11:44

Hey. Am about 8 weeks in with my pacemaker. Implanted after I, in essence, died on a hiking trail. Talk about a wake up call!

You'll have different feelings. I felt like I had stiff wires in my chest. All getting used to a new piece of equipment. Hardest thing is not to think something is going wrong and push the panic button.

If your health insurance allows it, see if they'll pay for a few sessions with a psychologist who specializes in trauma. Having a disinterested, objective, third party to discuss concerns really helps. Or, if your wallet allows it, pay for a few sessions.

Also the psychologist warned about depression and gave me some suggestions to help alleviate the situation. Don't know if it will work or not, but fore warned is fore armed.

In the meantime, do something you like. Live dangerously, eat some salted french fries. Watch a game, movie, or something. Kick back and get your mind off the present situation. Spend time with a therapy dog. Nothing like a cold nose, doggie kisses, and a warm heart.

Every day for me is a bonus day, every minute is a bonus minute. Hang in there - it gets better!

Theknotguy

Massive Thanks

by niggy2 - 2013-11-16 04:11:18

Thank you all so much for your answers - incredibly reassuring. It's great to have people out there who are so supportive, bless you all.

Just one more question please.
My ICD is set to trigger at about 167. I'm not the fittest guy but I really enjoyed cycling, however I'm sure my natural heart rate would be near this figure when going up hills etc. am I likely to get a shock ?
Thanks again
N

It all depends

by Marie12 - 2013-11-16 07:11:13

Are you on any medication to lower your heart rate? I have found that since ICD implant and with the medication I am on it is difficult to get my heart rate past 110 and that is when I am jogging.
My ICD is set to go off at 150 but the Dr explained me to that 150 is when the ICD would start monitoring and would begin the first level of therapy (which I probably would not feel). As the heart rate goes up, the second and third levels kick in. He also said because of the medications, it is unlikely to go that high as a result of exercise.

Do you have a heart rate monitor? You might want to try one whille cycling so you can monitor. If you are getting close to that rate, slow down. If you do get up there, you can discuss it with the EP and it may be appropriate to raise the number for you which they can do right in the clinic.

Hope this helps and visit here often. It really helps to get you through things and it really will educate you alot. Most members have pacemakers which is a little different but you can filter the info.

Fear

by Acin - 2013-11-19 11:11:40

I remember the first store I entered after my ICD. I was terrified that the metal dector was going to go off! LOL! It didn't! I took my daughter to an amusement park about a month after I got my ICD. I REFUSED to let the guy scan my body w/the metal dector scanner! I mad a HUGE scene! He let me in and only scanned me from the waist down. Talk about paranoia... you are not the only one! It's been almost 6 months for me and I'm still paranoid!

You know you're wired when...

Your old device becomes a paper weight for your desk.

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