New here but not to a pacemaker/icd

Hi I'm Val

New here as my title says. I've had a pacemaker since I was 3. Now at 40, I'm on #8. I was born with complete congenital heart block, and basically had to get big enough for a pacer. (1977) I've had replacements at ages 7,9,16,26,31,35 and 39. I've outgrown the lead wires, had paces short out, batteries die, wires drive thru the wall of my heart, and as a added bonus the dr in June during a replacement tore my rotator cuff! So pretty much had it all. In 2004 I added to the mix a third child and heart failure, with cardiomyopathy. The replacement at age 31 included a defibrillator. I'm happy to say that I'm not longer in heart failure, and cardiomyopathy is better.

Now after the crappy replacement in June of last year I'm changing drs! Haven't changed in 13 years, but am a little bitter that the dr cut me 3" above were the unit was and dug around on my first rib, and yanked my arm about trying to break the "incapsulated" pacer free, which he couldn't do. Duh! I've never been in so much pain!!! The shoulder hurt wayyyyyy beyond a normal surgery! So the next day a different dr took me back cut me open except 3" lower and was able to grab the old pacer out, and replace. Still 7m later I'm dealing with the rotator cuff trying to avoid surgery on that!!!

Anyways that me... Haha

Val

4 Comments

welcome!

by Tracey_E - 2014-01-29 01:01:00

So glad you found us!! It's nice to have another long-timer. You sound like a fighter.

Mad on your behalf that they trashed your shoulder on a simple battery change. What a jerk! Hope it heals for you soon without surgery.

WOW

by Beckes76 - 2014-01-29 02:01:00

That is something else. I have been paced since Aug 1984 at age 7. Battery changed in June1989, Jan 1997, July 2005, and Nov. 2013. I had open heart surgery to repair my two holes that I was born with....my bundle of hiss was in the wrong spot and they didn't know it. The surgeons nicked it and went into Complete Heart Block. My first 3 PMS were in my right abdomen area....I had them move it in 2005 and I got rewired and everything. My original leads are still in but not connected to anything at all.

Welcome to the site...I found it in 2009.

Becky

I think it's awesome...

by MelodyMarch - 2014-01-29 02:01:57

That you are such a trooper through 8 changes and all the other stuff. (Kids included)

All I have to say that if my EP trIed something like that I would kick his butt to the curb and there would be hell to pay as my shoulders are vital to my career.

I can understand the whole "I don't want more surgery" route, but if your shoulder isn't getting better perhaps it's time to find yourself a good Ortho who isn't scared of your titanium friend. The tricky part is that orthos are in love with MRI, but also understand the restrictions, as anyone with a joint replacement can't have them either. They will find another imaging test for you. The rotator cuff surgery is fairly straight forward, they go in, clean it out and up and sew any tears. Then they lay you in a sling for 4-6 weeks no lifting (sound familiar?) then therapy. Several in my family have had it done, and while inconvenient (especially the driving part) it is much better than having a weak shoulder the rest of your life.

MelodyMarch

I Agree

by Moner - 2014-01-30 04:01:39

Hi Val,

Yikes, you had a rough go around this time.

I agree with Melody, I'd find another EP, can't imagine how hard he/she must have tugged to get that device out.

Hope you heal quickly

Moner
>^..^<

You know you're wired when...

You have an excuse for gaining an extra ounce or two.

Member Quotes

I had a pacemaker since 2002 and ever since then my life has been a total blessing.