Just Joined the Club.

Hello, everyone. I'm 38 and I was diagnosed with Nonischemic Congestive Cardiomyopathy in 2019, and I received my 3 lead CRT-D implant about 6 weeks ago. I do not personally know anybody with a pacemaker, much less someone my own age, so I joined this forum today in hopes of maybe finding some information, and/or comfort, to help me wrap my brain around everything. 
 

On one hand, I feel better than I have in *years*. My ejection fraction has been 20-25% for at least a full year, and it went up to 50% a month after the implant surgery. I can breathe properly, I do not feel like I'm dying anymore, and I don't have the insane dizzy spells I used to have hourly. I can actually do things now... walking, housework, exercise, etc. Another positive is that my wife and I can make jokes about how I am now a semi legitimate cyborg. 
 

On the other hand, I have what feels like an Altoids can under my skin and it's driving me crazy. The device is at the forefront of my mind constantly. Every left arm movement feels weird and unnatural now, and I feel somewhat nauseous every time I feel my shoulder move the device slightly during natural movement. The device is so large that my left arm movement seems severely limited. I'm having issues adjusting to the weird flutters, vibrations, etc. I'm honestly scared of being shocked from my difibrillator. It's just overwhelming. 
 

Are these feelings normal? Will I ever adapt to having a CRT-D device under my skin? Will wearing a t shirt not feel like torture at some point? I'm trying to be positive. I'm trying to focus on the fact that I'm alive, my heart works better, and I can be a better husband to my wife... but this mental stuff is just so hard to break through. I can't really talk to anybody in my life about all this because they have not been through it. Imagining a device in one's body is different than *having* a device in one's body. 
 

Thanks in advance for help and advice, and thanks for reading my long winded rant. 

 


8 Comments

You've come to the right place

by AgentX86 - 2020-09-06 17:50:10

Welcome to the club that you wish you didn't have to know existed.

It's great that you're doing so well already.  Soon you'll not feel you PM, or at least not be so consious about it.  As we say around here, it'll be like your bellybutton.  You'll know you have it but won't think about it much.  Now that you're feeling better, you won't have time to.  ;-)

An LVEF increase from the low 20s to 50% is amazing in this short time.  Note that 55% is normal so you're almost normal (bet your wife tells you that). 

I have a CRT-P, which is somewhat smaller than your -D but still larger than the average pacemaker.  Mine clearly visible under the skin and the leads can clearly be seen coming out of the box and turning towards the collar bone.  There is only about 3/16" of skin covering it.  Where the leads are visible sometimes bothers me but in the grand scheme of things it doesn't matter. In ten years, you can ask them to put the next one under your pecoral muscle.  It's a little more complicated and takes a little longer to heal but it'll be buried where you really won't care about it.

You're only six weeks out.  Give yourself a chance to heal, both physically an mentally.  It's common for people with ICDs to be afraid of a shock.  That's completely understandable but the reality is that if it does, it likely just saved your life.

 

Some advice..

by Hoser - 2020-09-06 18:00:16

1. Don't touch the device. Don't fiddle with it, leave it be.

2. Your feelings are normal, and over time you will all but forget the device is there.

3. Be careful not to bump the device, or you will definitely feel that.

4. Wierd flutters and vibrations are not coming from your PM. Sometimes the mind is too active for its own good.

5. Ask lots of questions, I find that doctors have lots of respect for patients who are informed. If your docs are not inclined to share with you, fire them and get new ones. 

Thank You.

by IronMan13 - 2020-09-06 19:33:36

I appreciate the advice and the responses. It's very encouraging to hear that I'll eventually adapt to the ICD being there. I have a fantastic cardiologist who is very experienced, knowledgeable, and transparent, but even he cannot fully answer some of the questions I have because he does not have a pacemaker himself. I am definitely happy I found this forum today.  

 

 

Advice

by AgentX86 - 2020-09-06 21:02:42

Hoser's fifth point is exceedingly important.  Just demonstrating that you've taken enough time to learn about your condition and hardware tells the doctor that you're serious about your health and want to make the choices.  They're much more willing to take time with you to explain what you don't know and make informed descisions.  If you don't do this research, there is a tendency to keep you out of the loop since, apparently, you don't care.  They'll move on to help those who do.  It may not be fair but helping people who show that they want help is only natural.

Research.

by IronMan13 - 2020-09-06 21:38:40

I fully agree with Hoser's fifth point. I actually did fire my first cardiologist because I felt I was taking my heart disease more seriously than he was. I read every source I could find about my type of cardiomyopathy, and he almost seemed annoyed that I knew my stuff before coming to my appointments. My new cardiologist (the one who did my device implant) has been amazing. He loves that I ask questions and do my own research, and he actually told me he appreciates that about me. I was prepared for the device itself, and knew how it worked before having the surgery, but I was not prepared at all for the mental stuff... that's the part he can't really help with. Luckily I found this forum today, and its been extremely helpful reading other people's stories. 

ditto

by dwelch - 2020-09-07 02:07:58

I like all of hoser's points.  My way of saying the fifth one is find a doc you trust, trust the doc you find.  I have for various reasons bounced around docs (and towns), but did fire one because I definitely did not trust him, literally treated me like a lab rat.  And the doc I switched to is one of the best I have had, and I have had some pretty good ones.

You are much of the way through the implant recovery.  And to some extent into the getting used to it.  I say the belly button/big toe thing a lot here, its true.  Give it time.  You bump it you feel it, seatbelts or heavy coats, etc might be annoying but you will manage, it is a small price to pay to have the device.  Look at the member photos, I was going to put mine up there, but we have some folks that are one or two ahead of me (my first one was 33 years ago and was bigger than the three lead I have now), back to the hockey puck looking ones that my doc showed me perhaps to imply that that first one wasnt that big.  I was skinnier then and it stuck out all the time, but I am alive because of it, so that is fine.

The mental, why me, what did I do to deserve this, etc.   Can I use my toothbrush, can I (get out of) mow(ing) the lawn, use the microwave, toaster...what was that strange feeling I got when I opened the fridge, can I not be near a fridge?   Its all good, even after decades you sometimes have the,  hmmm what was that, was that normal.  But those are few and very far between and they pass as nothing.  As many times as we tell you its all good those things wont affect you, the back of your mind doesnt believe us and as you head through life the next so many months, you might have some anxiety.  Everyone is different though.  

There is a massive weath of experience and knowledge here at least from the patient perspective as well as some folks that are well versed on the medical/technical side.  More than any one doctor knows.

You are definitely not in anyway the youngest first timer with a device, but you may be the youngest your doc has and may for most of your life be the youngest your doc has, is what it is.  It was like 15-20+ years of going it my own before the public internet and later a site like this came about to find others with pacers and share experiences.  All I had was the doc to talk to. 

You are not alone on this journey.

 

 

One more thing...

by Hoser - 2020-09-07 09:13:59

@Agent86X wrote: "An LVEF increase from the low 20s to 50% is amazing in this short time.  Note that 55% is normal so you're almost normal (bet your wife tells you that)."

You and me, my friend, are now members of the group WHOSE THERAPY IS WORKING! Lucky we are that the pacemaker improved our EF and corrected our heartbeats as hoped  before our surgeries.

This A-HA! moment came for me when they did the echo right after surgery and my EF went from 15% to 55. It has stayed there or a bit above in the four years since. 

I consider myself a lucky man, and this helped my attitude tremendously. I had my moments, of course, but the fact that the pacemaker was working as planned was a huge relief and played a huge part in my overall recovery.

I asked my EP how many people get this kind of a result, he said "A handful from what I've studied." So I count my blessings every day and move forward with that in mind...

Thanks Again!

by IronMan13 - 2020-09-07 17:37:10

Thanks again, everyone. I honestly feel a lot more at ease with everything after reading the replies. 

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