Pacemaker Newbie!

Hi everyone! I'm 29 and just had a pacemaker put in Thursday for sick sinus syndrome. I'm so glad to have found this site! I've been feeling very emotional yesterday and today because I feel so useless at home. My husband has been so great but I can tell its been hard on him too. My 2 year old daughter cries because she wants mommy to hold her and it breaks my heart. Today I started using my left arm a bit and it feels very weird. I'm so scared in going to pull a lead out or something. I'm trying to stand up as straight as I can for my back too. Does anyone have any tips on sleeping at night? I can't seem to get comfortable. Thanks again!😀

7 Comments

Welcome

by MM519 - 2013-08-04 08:08:58

I'm glad you found this site. I got my PM in June and was so grateful to land up this site, and get such valuable information and much needed support from the great people on this site. I was really careful to not lift my arm over my head and not to pick up anything heavy for the first 3 weeks. The whole experience made me emotional and having to limit my activities was really frustrating. I remember it being hard to sleep flat, so I slept propped up on two pillows and slept with my left arm in a sling for the fast two weeks, which helped. It takes time, so be patient with yourself, and even though you can't pick your daughter up, you can still cuddle in the couch. I hope you feel better. Take care of yourself.
Mariette

Welcome aboard, Jen...

by donr - 2013-08-04 10:08:27

... You've already heard from the Wal-Mart greeter on duty tonight, so on to reality.

Two points to make: 1) Imagine that all they did was cut you across the chest & sew you up & send you home. How long do you think it would take to heal then? 2) Imagine what it would be like if the PM was placed in your upper buttocks & you had to lean against it when you sat down & every step you took stretched the skin & the incision.

Well, here's the scoop - it will take you not much longer to heal w/ the PM in there than without. About the only difference is that you have to be careful of the rule about raising the elbow above the shoulder & lifting heavy weights w/ the PM side arm. Now, as to the 2 yr old daughter. Is she still crawling around on the floor, unable to walk? Why can you not sit down on a couch & allow her to climb up into your lap? No prohibition against that.

You will NOT pull a lead out if you follow your instructions. There's plenty of slack in the leads & you'd have to perform on the Flying trapeze to dislodge one of them. It's been since Thurs that you had it installed. Look at your skin incision - is it still bleeding? Basically knit together? Consider how hard you'd have to tug on the incision to get it open, Same thing for the two leads where they go into your heart's wall - IF - the surgeon planted them correctly/ Do not make yourself into a cardiac cripple for the next few weeks. Be as active as possible w/i how you feel.

Now as to the buttocks part. This will hopefully cheer you up. My wife just got a PM & it is placed down there. No, it's not for her heart, but for bladder incontinence. Made by Medtronic. Just hope that they did not get things mixed up & slip one of those into you. Every time you feel a twinge of discomfort, just be thankful that you do not have to st on it!

Cheers.

Don

I Know What You're Going Through

by D from NYC - 2013-08-04 11:08:44

Hi JenZ

Glad you found the "Club". I'm a relatively new member myself and have learned so much from the regulars here. I just got my CRT-D 11 days ago and I know just what you're going through minus the baby. I thought a MAC truck ran over me. But I can tell you each day it gets better. The pain is gone, but I don't want to fool anyone it's still sore, but not what it used to be. So listen to the regulars - they know what they're talking about. You WILL be just fine. Give yourself the time to heal and this will soon be a memory. Look at the bright side, if you have no infections or complications from the surgery, then its all good. Hope by your 11th day you'll feel as good as I do. Best of luck in your recovery.

D from NYC

You'll be fine!

by Sharecropper - 2013-08-04 11:08:51

Hi JenZ. I am 4 weeks out from having the PM implanted. Like you, I was terrified to move for fear that those leads would pull out. My doctor told me he did not want me to wear that sling during the daytime because he wanted me to exercise the shoulder to prevent ending up with "frozen shoulder syndrome". I've had that before and trust me, you don't want to go there. Just don't lift the left arm up over your head or pull you arm behind your back like trying to zip a dress or something for at least 4 weeks. As far as emotions.....wow did I have a lot of depression. Finally came out of that after 3 weeks thank goodness. I decided I could sleep better on the couch with my left arm pressed against the back of the couch. It worked great for me. In fact, I found I didn't have to wear the sling at night because the arm was stabilized really good by the couch, and since the couch was so narrow, I didn't try to turn over as much as I did if I were in the bed. Just know your concerns are very normal and will pass in a couple of weeks. Let your baby sit on your lap and give her a big hug.....you'll both feel a lot better!

Take it easy

by swallace - 2013-08-05 09:08:43

I have just come up to one year after the PM was put in for SSS. It takes some adjusting to, but you will be okay. There is a fair amount of give in the leads (I saw mine on an x-ray), but you should just follow the instructions. Having a device in you can pinch at times, you will just have to get used to it. If you are worried about putting your arm above your shoulder in your sleep, tie it down to the bed with a tea towel and just sleep on your back. You can get back to exercise after 6 weeks (running, swimming etc...), but make sure that your base and upper rates are set high enough or you might struggle. Your daughter will get used to it, give her a couple of months. Joke about it, I know, it's not funny, but it can be a way to help everyone relax. You may get flare ups from your sinus node when you are stressed. Go to a doctor if that occurs and you are worried. It took me about 5 months to get back to normal (I'm 39, so you might be quicker). Remember, you have a heart problem and you had an operation. Take it easy.

also recovering

by RosyEatWorld - 2013-08-08 11:08:54

Hi, I'm also a 29 year old female and just got my pacemaker 3 days ago for third degree heart block. I've been pretty sleepy all week and haven't done much. Sleeping with pillows on my sides tends to help me at night. I also haven't worn a bra since and am kinda scared to. It's pretty depressing not being able to shower or do simple things on my own. I feel young and energetic just have to rest and wait to heal.

I can so relate to that...

by Heartbeatflutterfly - 2014-11-25 08:11:39

Hi I'm a 29 year old female too, and had my insertion done three-weeks come tomorrow and the sleeping has been so challenging, bought me to tears the first few nights and it's only been of recent that the discomfort is slightly, not by much, become more bearable than the first week and also being 'top-heavy' is a challenge on top of a challenge pillows upon pillows upon pillows barricading me in at the beginning of going to sleep but end result of all on the floor and me almost going with them!
It's definitely a no-go with a bra at this stage which is so...well...not a trend that'll catch on for the long term!

It's comforting to know that I'm not the only one going through this, it really has helped as I have no one around me going through or even ever gone through having a pacemaker, that can relate to the whole ordeal at all!

So I find a slight peace of mind, with this online community of ones 'been there done that' and coping with all different experiences of the ordeal, from the levels of discomfort to comfort that I'm not alone and it is really great to know that...

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It may be the first time we've felt a normal heart rhythm in a long time, so of course it seems too fast and too strong.