Newbie

Interesting

by PacerRep - 2018-03-02 08:54:34

It's interesting to me that if you truly have complete AVB, that they did not want to give you a device sooner. What is your heart rate usually at?

If you have 1 cardiologist saying yes, and 1 saying no, I'd go see what a 3rd guy says just to be sure.

That being said, if you have AVB, you are going to pace in the bottom part of your heart a lot more than most people. At your age this could be problematic in later years. I would absolutely ask the physician about a device called a CRT-P. This device has a wire that paces both sides of the heart so that it beats more like a normal heart. First thing is to find out if this doctor implants those, if not, he may advise you against it (so ask someone else). Usually only electrophysiologists implant these, regular cardiologists don't. 

I would get a few opinions on the CRTP before comitting to a standard pacemaker.

Post procedure

by High Voltage - 2018-03-02 10:15:55

Hi Nicoled.I think after reading a lot of posts on here that everyone has a little different experience post procedure.

But for me,and I think based what I have read here,there are common themes.

The incision does hurt a lot.There is bruising.My doctor only has you taking Tylenol.Although it hurts it’s not so painful you have to sit around in bed.

sleeping for me was difficult for a couple nights because I am a side sleeper and had to be on one side for comfort.

Overall not horrible and definitely worth going through to get yourself right.

I am at 2 weeks and the incision area is sore but a lot better.I am going to try driving today to see how that goes.

Also I would take pacemaker reps advise.

But it sounds like you probably need one.

You are young so I just wanted to tell you my wife’s brother had one put in around 30 and he is in his late 60’s now and it’s working for him all these years.

So wish you the best of luck and I would say for me it wasn’t a bad experience so far.Just have to give time for the body time to heal.

welcome

by Tracey_E - 2018-03-02 17:01:56

Glad you found us! I too have CCHB. Once you heal, you shouldn't really have any restrictions. We can use virtually any appliances in the home. Most things we need to look out for are industrial settings, not anything we'd run into often. Newer pacers are well shielded so much of the advice you hear is old news. In order to interfere, a magnet has to be strong enough and close enough to put it in test mode, usually 6".Magnets in headphones, cell phones, etc, are not strong enough even if they are close enough. 

I don't feel mine pace. I can tell it's there if I poke around looking for it, but it's deep enough that it doess't get in my way and the scar is inconspicuous. Most of the time I forget it's there. Ask about placement. Some docs do it right under the collarbone, just under the skin. Some do it lower and deeper, some put it under the pectoral. I have mine well buried under the pectoral. It meant a longer healing but now I can do whatever I want- Crossfit, hike with a heavy pack, kayak- and it never gets in my way. 

Wear a button up top to the hospital because you won't want to pull anything overy our head the first week or so. I found it helpful to sleep hugging a small pillow, kept me from rolling onto my sore side in my sleep. 

If you are going to get a third opinion,  I would suggest looking for someone who specializes in adult congenital. What we have is rare so it's not uncommon for us to be the only patient in the practice. I drive an hour to get to mine, but they have 1200 patients like me so it's well worth it for their depth of knowledge and first hand experience. 

https://www.achaheart.org/your-heart/clinic-directory/

Hello! Yay another 20-something year old!

by NiamhM - 2018-03-03 06:48:49

Hello, I'm 23 with a pacemaker all my life! 

In general you won't feel the PM, and if you're super active (like dancing) see if they can put it deeper in the chest.

Surgery isn't bad, providing its a general anesthetic, and just keep your arm tucked into you afterwards to protect it, possibly wear a sling if you use a lot of public transport and dont want people bashing into your chest or making you hold onto rails, can be a real saviour!

Long term, the only thing I notice with mine is I can't sleep on my chest, and I still can't do a pull-up at the gym :-P Once recovered from any surgery, it does not effect my social life (just always carry your PM card in case of random metal detectors at clubs and museums), exercise, work, or sex life, so its just peace of mind. And scars can make for a good story so I wouldn't worry about those :) 

With phones, I've only ever been told to maybe avoid Blackburry's, but in reality just don't sleep with it under your pillow.

If you have any questions do let me know, be happy to help :-)

6 Days After Op

by NicoleD - 2018-03-11 19:18:59

thank you everyone for your advice :) I had the procedure done last Monday as planned and feel great for it! Recovering well just anxious about the change!