Brand New Pacemaker--Emotional Roller coaster

I am just a one week post-op pacemaker for sick sinus syndrome and have had a roller coaster ride with my emotions. I am an RN and was really taken off guard by the emotional aspect of this. There should be more patient information about this!!!

I've also been very concerned that having a pacemaker now will dramatically shorten my life. I just turned 40. Much of the data I've read doesn't have much information/data past 30 years. Just need some reassurance! Thanks!

14 Comments

I'm Three Weeks in.....

by kwhite62 - 2012-10-28 08:10:02

I'm looking forward to seeing more comments on your post as I too have had an emotional time of it. I just got my pacemaker 3 weeks ago. But I'm like John, I think the pacemaker is not going to shorten my life, but it may have already lengthened it. I got mine due to sick sinus syndrome also and the condition itself may not have killed me but I could have passed out while driving and killed myself and maybe somebody else. So even with the difficulties I've had with it, I'm thankful for it! I'm sure as time goes by we'll get used to it and hopefully not even think much about it anymore.
Good luck,
Kathy

Hi

by 28sedan - 2012-10-28 08:10:49

I allso have aPM for sick sinus syndrome my roller caoster ride was like yours. I could not sleep for aboit 2 weeks then the anxiety kicked in and I never experienced this heavy depression ever in my life. I was 62 when PM was installed. Whta helped me was talking to people sharing my fears. Sleep for me was paramount in helping me cope with all this new me stuff. I worked off the anxiety with long walks at a steady pace.
I took Zopliclone to help me sleep. It worked well but can be a problem getting off of it.
I am considerably better today 18 months now. So keep coming back here you are not alone and I dont think this shortened my life hell I was allmost dead thats why they gave it to me.
I got more life already. John

It never ceases to amaze me...

by donr - 2012-10-28 09:10:23

... the surprise of medical types at the psychological impact of a PM!

And - often when we go in to discuss it, we are brushed off with the comment "It'll get better," Or "You'll just have to live with it." Women, in particular, are treated as "Just another hysterical female."

I sing a crappy baritone; there are sopranos, altos & some basses in this choir. Hope your sermon is good, I don't want to go to sleep!

If you think I am a bit harsh, I am, but you have highlighted a major problem that infects the cardiology community.

You did not say what specialty you serve as an RN. Do you have one? If not, when we get you over this mess you face, why not go forth & try to fix the situation? Most Cardios can always use good RN's. How about learning about the psycho aspects & signing on w/ one to help his patients w/ this issue.

For starters, the PM has not shortened your life. It has, if anything, lengthened it. How long do you think you would have lasted w/ the SSS you had? How much fun would that life have been?

There's not much data beyond 30 yrs because PM's haven't been around that long. The record for longevity is in the upper 40's. Consider how "Crude" PM's were 30 yrs ago. Integrated circuits w/ the super computing power were not available. You'll hear from several people who have been paced for 20 plus yrs.. I think you'll even hear from a 37 yr veteran. That little disk in your chest has as much or more computing power than your desktop or laptop. It can run for years on an itty bitty battery. It can check your hearts functioning; make it beat correctly, store about 6 months of data on what it does; check its own fubctioning on a daily basis; modify its performance based on what it finds during a diagnostic check. It's the same technology that took the recent MArs lander across millions of miles, landed it safely & got it up & functioning. It;s in YOU to make your heart function nearly normal.

You'll hear all sorts of horror stories about PM's. Before you believe them, ask us.For now, just relax & get over your surgery. Expect to feel a bit physically crappy - after all you just lost a knife fight in a downtown bar & got sewn up! How would you expect to feel after that? HMMMMMMM?

Now for the psycho aspects. It is NOT unusual to feel a bit anxious as you get used to being computer controlled. But, hey - your heart just told you it was less than reliable for the long run - after all its electrical control system crapped out on you after a mere 40 yrs! Your PM is better than that for at least the next ten - then they replace it because it needs a new battery. Maybe it's fewer yrs - but at least it is replaceable! Your heart surely isn't.

Ya know, the cvardio community is well aware of the psycho issues w/ folks who undergo major interventions - like CABG's Valve replacements, etc. they just cannot seem to get their arms around people having problems when "All" they do is slice you open. work a harpoon or two down inside your heart; sink them in the walls like Capt Ahab did to Moby Dick; plop a half pound brickbat inside your chest & sew you up. Especially if you're a woman & worry somewhat about what the scar & lump will look like in six months or a year. Well, if you are like most women, it will not even show - unless you get a great, big red arrow tattooed on your chest that says "Hey, look at my PM!" A lot will depend on the skill & care of the EP who did the job. But you will have no idea what it will look like till it looks like it will in about 6 months, so you gotta be patient & wait. THEN make a judgment.

Maybe you won't have any significant psycho effects - BUT if you really try to have them, you will. The reverse is NOT true. There is a lot to learning how to live w/ what has befallen you. Start w/ a positive atitude. Learn all about the little buddy you have accepted as a partner in life. Learn to trust it (He, She, it - whatever you choose to call it). Take command of the situation. Tell the little parasite that it goes where you go, does what you do, when you do it & where you do it. You will brook no nonsense from it. You will NOT let it control you. Yu will slowly learn your limitations & there are a few. But today is not the day to worry about that.

Right now, keep the old elbow below the shoulder, mind what you lift & don't get it wet. Oh, BTW: don't do anything that is foolish.

And come back soon, ya hear!

Don

RN too

by ChristieD - 2012-10-28 10:10:39

I'm an RN also. 5 weeks post op and I know exactly what you're talking about! The above posters have already said the things I would have said but I'll add it WILL get better and you WILL feel better!

I compared my experience to my nursing buddies to the Kubler-Ross five stages of grieving: denial, anger, bargaining, depression & acceptance. I went through them all.

Don't let anyone let you feel bad for the way you feel. It can be very disheartening to hear "we'll it's better to have a pacemaker than be dead". Can't tell you how many times I've heard that or some version of it. Yeah, I'd rather be alive, but IDEALLY I'd like to do it without a backup generator.

This forum has been very helpful. Hang in there!

Welcome

by Grateful Heart - 2012-10-28 10:10:48

Glad you found us. I too have SSS. I've had my ICD for almost 4 years now. It's frightening to realize your heart failed you. It takes time to feel comfortable with your new device, but you will.

Take time to heal, both physically and emotionally and learn what you will about life with a pacemaker. This site is a great place to start with a wealth of information and kind, caring and knowledgeable fellow pacers.

Take care,

Grateful Heart

Great words of encouragement

by FitMom - 2012-10-29 03:10:44

Thanks to each of you for the encouraging and thoughtful replies. Thanks to DONR for making me laugh out loud. I needed that! I'm back at work today and good energy both mentally and physically so far. You guys really helped change my perspective. I will definitely be a regular here. Wonderful sense of community.

Patch - a bit of trivia on Frank

by donr - 2012-10-29 06:10:13

Patch - you do know why Frank chases Coyotes, don't you? At 120 yrs, he found out that he was now too slow to catch road runners. So he gave up futility & went for the slower prey. Worst part is that occasionally he catches one then has to figure out what to do w/ it! Sorta like the day my German Shepherd caught the neighbor's cat. She came home carrying her nose between her teeth!

Don

Found one!

by donr - 2012-10-29 08:10:27

A member named Gellia has been 100% paced since YOU were 2 yrs old - that's 38 yrs. Now that's approaching the period of existence for the modern PM of truly micro electronics days.

Can you imagine what a PM would have looked like for Fred Flintstone?

Don

Understand Completely!

by TRL28 - 2012-10-29 08:10:39

Welcome love! I'm a little over 2 weeks post op and today was the first day i've felt everything is going to be okay. I just had to keep telling myself that even though this wasn't a major surgery, my body needs time to heal and my mind time to adjust to not only the new sensations but also psychologically. I'm an RN also and like to be in control of situations and know what to expect but this definately threw me into a whirlwind. I went in for a simple ablation for AVNRT at 28 yoa thinking I would be in and out and ended up with a CHB and then Pacemaker 5 weeks later. I haven't been able to find much info inregards to long term effects of pacing either, and believe me I looked, but finally have came to terms that I'm still here now and if I need to cross another bridge I will when I get there but worrying myself half to death isn't helping me on any level. Also, If you think about it, its kinda like we have a continuous EKG on and if our heart does do anything funky it'll alert our doctor or we can get it checked out and they'll be able to diagnose alot quicker. I do know a gentleman that has had his since 5 days old and is now 33 and doing well if that helps ease your mind at all. Anyways, keep your head up and don't hesitate to ask questions. If you go to the top right hand corner of this page and hit search, you can bring up old searches/comments on whatever is bothering you. There hasn't been anything yet that i've thought about that I wasn't able to find some info on here about.

Patch

by Grateful Heart - 2012-10-29 08:10:46

Maybe you should stop wearing perfume! LOL

you guys...

by ohiolaura - 2012-10-29 09:10:11

Oh my ,you guys are too funny!
I always need a good chuckle,and got a few here reading all the posts here on this thread.
Kudos to you all,and keep up those stories,esp the roadrunner/coyote one,really enjoyed that!
Im just waiting here in Ohio for some witches to go flying past my windows here,since the winds from Sandy are kicking in,its making my dogs think alots going on out there with all the noise.
Just hope the power stays on........hope I dont have any good stories about this weather,someone please send some calm here,fast!
Laura

so nice to read good positive thoughts.........and get a laugh!

I agree

by ohiolaura - 2012-10-29 11:10:39

All the words written are right on,and you are correct,there is not enough support given when you face this,especially if it is out of the blue.
I had my PM put in 5 days after I was told thats what I needed,for Mobitz 2 block,so I had no time to research let alone get alot of info on it.
I just said,ok, well,I have no choice,and waited in the hospital,the Cleveland Clinic no less,like the best Cardiac hospital there is,so reports say.
After coming home,I had no info,and so many questions and also emotions.I did email the Clinic,letting them know that I think they needed to have a patient advocate there for people like me,49 yrs,and just having a big ole bomb dropped on me,just the shear amount of life altering emotions I was dealt.
I had alot of anxiety,which I NEVER have had before,I am tough,but this kicked me more than once while I was down.
I had to take meds to help me sleep,which was more than helpful,thats long gone,and also something for anxiety,which about killed me to admit that I needed.
Long gone too,I have fought thru it,and sometimes I do still fight with myself to stop a bad thought about my health,I try to focus on the positive,and keep good thoughts in my head.
I am a glass half full person,more now than ever.
Its a slow go,but if you stay as positive as possible,and busy as you can,stay distracted,it should help.I started working out slowly not long after,and it was slow,but it helped me alot.
I am now back to doing about what I used to,even with a little voice in my head sometimes telling me to pay attention to my body.I work out 7 days a week again,between elliptical,walking,spinning,it's working for me,and I feel good.
I will say,listen to Donr,he helped me so much,words of wisdom,encouragement and knowledge have been essential to my recovery.Thats what it is,recovery,look at it as something you work thru and succeed at.
I will be 4 months post PM implant this week later on,and have gotten to the point I am counting in months now,instead of weeks.
You need to stay on here and post your concerns,and believe me it will help you,the amount of support thats here,this is am amazing place to have.With amazing people.Who have been and are in your shoes.
Stay positive,and ask what you need to ask,as someone on here told me,you will make it!
Laura

Laura's witches flying by

by donr - 2012-10-30 01:10:38

Laura: We live in Nawth Jawja, way out in the woods, about half-way between Etlanner & Chat'nooga. All we got/are getting is wind - about 25 mph in gusts.

We have a Crepe Myrtle tree that stands close to the side of the house, right outside the small toilet room in our bath. This tree - actually it's a shrub, having multiple trunks - is as tall as our two story house. These things have a gadzillion seed pods on them, that act like little ball bearings in a cat-o-9-tails when swung through the air on the ends of the branches. You'll be sitting there, peacefully minding your own business, when a gust of wind will come along & slam a branch full of these little pods against the window & scare the daylights out of you - you'd swear someone was coming through the window! You make a mental note to prune those suckers the next time the weather is decent.

Another Sandy Vignette: Our #1 Daughter, Susan, lives in the VA 'burbs of DC. She sent us a note this evening saying that so far tonight, they had not lost power - just a lot of wind & some rain. Their Schnauzer held his bladder overnight & today till 1:45 PM, when they decided he should go out. She had to pick him up & carry him outside. Guess she was thankful he isn't a St Barnyard!

Cheers w/ the visitor - more wind, but this time it's not coming from politicians.

Don

Welcome to this great group

by rvrs708175 - 2012-11-01 05:11:20

Like you and others, i went through the depression. I didn't even have time to prepare mentally to getting the pm. not sick, no heart problems, just one day exhausted with a pulse of 28 and zap I was getting the pm. Sure it was depressing, scary, but this wonderful group got me through it. I found it the first week. Come back often, give advice and help to other newbies, it can help. remember, you are now a survivor. enjoy each and every day. Life can be wonderful if you let it. Ann

You know you're wired when...

You can feel your fingers and toes again.

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