21 days after Pacemaker/Defibrillator inplant

Hi everyone. Its been 21 days since my pacemaker/defibrillator inplants. It was placed on December 8th. Im still dealing with soreness and tenderness on the area were the ICD is at. I noticed when im outside in the cold I feel a throbbing/achy pain. Is that normal? Is it because of the cold weather? I noticed my sleep patterns changed. I cant sleep. Im up till 4am-6am in the morning, when before I would be asleep by 11pm. Also , I find myself always thinking about the ICD shoking me. Is there any sites you guys know of to help me cope with my anxiety? I think this is the reason why I cant sleep at night. I have tried sleep aids such as tynenol PM and it does nothing to me. I believe its my nerves that keep me up late.

FYI: Im 26 years old and I have congested heart failure and cardiomyopathy.


Thank you everyone.

Vanessa

3 Comments

Good Grief!

by donr - 2011-12-29 09:12:55

Nessa: I just went back & read your two threads. I wrote you on the one about facing the surgery & fear.

Looks like Electric Frank & i were both wrong about how easy this surgery would be. I just read your Post-Op report. That did not sound like fun. I have a minor association w/ that pain, so i have a small inkling of what you went through. I tried to make it through my wire replacement job w/o the opiates to control the pain. Not sure how long I lasted, but asked for it quite soon into the procedure. Then it was La-La Land as far ass pain was concerned.

You went into this event w/ some pretty heavy anxiety. Your experience definitely did not help you, as painful & dramatic as it was.

You could be suffering some PTSD after the surgery. You are showing some of its symptoms - sleep disturbances, fear of the ICD firing, always dwelling on what has happened & what might happen.

I suggest that you Google on PTSD & scan some of the thousands of sites that come up. Now, nearly all of them focus on soldiers & combat issues, but ANY traumatic event can cause it.

Drugs w/o medical monitoring is NOT the way to go - too high a probability of gettng hooked. Alcohol & sleep aids are the two most common pitfalls of troops who bring home PTSD. At least in the beginning. It's calledself-medication. Not a safe road to travel.

If you can afford it, a shrink of some sort who SPECIALIZES in PTSD can help a lot if used in early stages. Your cardio is not necessarily the best place to go for help. To be brutally honest, they will brush you off as "just another hysterical woman."

Talking about your cardio - have they revisited your PM settings? You say you have a PM, not just an ICD. What are your settings? The one that looks like 70-140 (or some such). The lower number is the base rate that your PM will not let your HR go below. the higher is the PM's uper limit for pacing. Beyond that number it becomes a passive recorder of events. IF the base rate is too high, it can very definitely keep you awake.

START HERE!!! This is the simplest solution. Talk to your cardio about the sleep issue. Specifically ask about the base rate & another function called the Sleep Rate (or some such term). Your PM may well have a capability to turned down at night to allow a slower HR so you can sleep. It's an optional setting & has to be specifically turned on.

Soreness, etc. This far out Post-Op you should not have that kind of trouble. That being said - YOU DO! Why? Perhaps the trauma of the surgery left it a bit messier & hence sore longer. Maybe it's psychological - but it's still real. Is it RED? Like it's infected? Do you have a fever? This one you should talk to the cardio about. COLD - in Azuza, CA??? You are kidding, aren't you? Let's hope Janet in Alaska doesn't read this one. She will die laughing! All joking aside - yes the cold could cause aching/throbbing at your scar site. I've had that happen before, but it took temps below freezing to do it. What do you consider cold?

Good luck w/ all this, Vanessa. You have a tough row to hoe, no question about it.

Look at the simplest solutions/answers to questions first; work your way up to the more complex answers.

Don

Don and Cabg Patch

by lovelynessa - 2011-12-30 02:12:41

@Don, My experience were unbelievable. Never I thought it was going to be what it was. I felt confident that the procedure was going to be great with minor pain. I was in shock with the pain i experience during surgery and days later. Im glad its all over now. I have googled PTSD and found some help in coping with my fears. I will also discuss this with my doctor soon. Hopefully theres something I can do that doesnt involve sleep aids.

Im unsure of my PM settings. Im sure the doctor told me but I dont recall since I was in a lot of pain after my surgery. I will call my doctor tomorrow and ask about my settings and my sleep rate. Hopefully they can tweak it to see if that can make a difference in my sleeping pattern.

The area were my scar is and the icd placement appears to be no redness or signs of infection.I have no fever or cold. I just feel soreness and a bruise like pain. Yes I live in Azusa and what we Californians consider cold is below 50 degrees. We in cali are not used to cold weather. We are used the Sunnny Cali weather ;)

Thank you so much DOn for your comments and informative advice. I appreciate the time and effort you put to guide me to get some answers. I did read the other messege on my last blog =)

@Cabg Patch, Thank you, it makes me feel more at ease to know that its common to feel some sort of discomfort still after 21 days. I was looking at it today and making sure nothing looks unsual, and it looks fine to me. The bruisin is fading away.

As for my sleeping pattern. My problem is falling asleep. I feel sleepy and im yawning but I cant seem to fall asleep. As if my body is fighting to keep awake for some reason when I feel tired and sleepy. I will bring this up to my cardiologist because its really starting to annoy me.


Thank you for your advice. I will discus these questioth my doctos and hope to find answers. Its always nice to ask individuals that are actually going through what i am questions. =)

Waiting for CRT ICD

by Drewgirl62 - 2012-12-18 08:12:10

Hello from New Zealand.

First timer tuning in. All this stuff is scaring the hell out of me I can tell you!😎
I am getting these devices implanted in the New Year, and would love to know how lovelynessa is, 1 year on?

I have dilated Cardiomyopathy with an EF at present of 25% I am 68 yrs old wife, mother & grandmother of 12 who cannot participate much anymore in all their comings and goings because of tiredness, fatigue from doing nothing and I sleep an awful lot.

When first diagnosed 10 yrs ago after a month of constant coughing & SOB finally went to Dr who called an ambulance immediately after checking my BP, it was so high. Turns out my EF was at 15% spent 4 weeks in Hospital and then sent home with a load of Meds. Which slowly raised my EF eventually to 30% over time.

Now the Meds aren't working for me, they keep changing and try different ones to no avail, my BP was at 40/50 for ages, but change of meds has brought that up to 70/50 so all the dizzy spells every time I stand are much better, in fact hardly happen now. I have chronic heart failure, my heart is so large and now completely round in size, hence the offer of the CRT ICD.

My biggest problem is that I don't look ill, I'm sure people think I'm putting it on When I am unable to attend things. My husband is my carer but he seems so angry these days with having to do everything for me for past 5 months. Then I read all these stories and realise it won't be a quick fix as I imagined it would be. It may be months before I see any rise in my EF as well as pain and discomfort. One has to wonder if its all worth it .

Love to hear back from anyone who has had these implants.

Merry Christmas

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As for my pacemaker (almost 7 years old) I like to think of it in the terms of the old Timex commercial - takes a licking and keeps on ticking.