Advice wanted

Hey all, I'm 25 years old and was told this week that I'm going to need a pacemaker. My cardiologist said that I could try to put it off for a little but that the only way to improve my quality of life, and stop being symptomatic was to get the device. I'm just hoping for some insight on how it has affected lives and if I should try to put it off. Im pretty afraid of all of this and I want to make the best decision.
Thank you.

4 Comments

been there!

by Tracey_E - 2014-11-07 07:11:26

I was 5 when I was diagnosed, in my teens when I realized what a pm was and that one day I'd need one. Yes, I flipped out! I should have had one in my late teens, early 20's at the latest but waited until I was 27. My dr didn't want to do one on someone so young, the internet wasn't around to research it and find a place like this. No one pointed out to me that I would feel better with it, so I was determined to tough it out as long as possible. I waited so long that my heart rate plummeted and I almost died, ended up in emergency surgery and scaring my family. Not the easy way to do it!!! If you can't do what you want to do, if your slow rate is keeping you from enjoying life, just get it.

How you'll feel after depends on how bad you feel now and why you need it. Some people come out of it feeling the same, but they didn't have a lot of symptoms before so it's no surprise they feel the same. For some people, it's a bandaid and safety net rather than a true fix (I doubt you're one of those since you are otherwise healthy), which means they won't feel better. For the rest of us, we can come out of it ready to take on the world.

My rate went from the 40's to the 20's to a normal rate once paced. I felt like I'd been mainlining coffee from the time I woke up in recovery, drove the nurses crazy in the hospital because I wanted to pace the halls just to burn off energy. That's extreme, but my change in rate was extreme also.That was 20 years ago and I haven't really slowed down since. I hike or ski every vacation, do Crossfit 5 mornings a week. I'm taking my daughter kayaking tomorrow after gym class (praying it's not a heavy arm day!). My point is, there's nothing I want to do that I cannot. I feel great. In hindsight, putting it off was dumb. I wasted time I could have been feeling good. What difference does it make now if I've been paced 20 or 22 years?

The unknown is scary, that's normal. So learn about it. Go through the old posts here, there are several good ones explaining the procedure and recovery. Actually, there are probably hundreds as it comes up at least once every few days :o) Skip over the posts about complications. Keep in mind that for every one person with a rare complication coming here for answers, there are thousands out there getting on with their lives. Complications are rare, less than 1%.

St Jude's website has great animations that explain how a normal heart beats, most of the common conditions that lead to a pm, the implant procedure and how the pm works
http://health.sjm.com/arrhythmia-answers/videos-and-animations

Been Where You Are..

by Runningmama - 2014-11-07 09:11:28

Hi there, I am 34 fit, healthy, extremely active (runner) etc you get the picture. Two weeks ago, I was diagnosed with stage 2 av block type 2. I had been having presyncope, fatigue, heart pauses, passed out a few times, dizziness, bradycardia, etc...

From what my EP and Cardio said : The only treatments are nothing which will lead to death ultimately, or getting a pacemaker which will "Fix me now". I have cried, cried, begged, prayed, felt broken, second class, etc but at the end of it all, I realized that I am back to having only 2 options, do nothing and eventually die while the symptoms get worse in the meantime or get a pacemaker and "be fixed".

So Monday I am checking into the "heart hotel" and having a Micra TPS pm implanted. I am terrified.

Go check out the micra, it seems perfect for young (or all) extremely active, people whom can get by with only one chamber pacing. My EP said he likes this leadless option for me because I am young and it keeps him from having to put leads in my veins right now, he can save them for later in life if need be. You hear that? Later in life if need be, he actually said that, later in life. Music to my ears, I can live to be a 110 and live MY LIFE...

My point is, the symptoms suck and they usually get worse, in my opinion from what I've been told. In my case, they will get worse and then I will probably die (maybe not today, tomorrow, or next year but heart block like mine does not just go away). BUT, I can get the pacemaker now, have more awesome days with no symptoms and be FIXED now so that life is mine to live again on my terms.

We are more than our scars, but they make us who we are.

Hope this helps!!! Best luck to ya!!

It's scary but worth it

by barnet38 - 2014-11-08 05:11:14

I was born with 3rd degree heart block and always knew I would need a PM. Like TraceyE, my cardiologist wanted to put off PM implantation until it was absolutely necessary. I made until age 17 and then my heart rate continued to drop until it was in the 30s. I couldn't even walk up the stairs. I felt so much better after I had the PM implanted. I was scared about the surgery, but everything went well and soon I was actually able to live a normal life. Before the PM, I had soooooo many restrictions due to my condition. Now I can do anything that I want. I workout at the gym, hike, bike, run, etc. Without the PM I would have died long ago.

I'll be getting PM #3 in about a year. My first PM lasted 8 years. I have a dual-chamber PM and am 100% paced.

Hi Ohman

by 2219kg - 2014-11-08 08:11:51

Like Barnet I was born with a third degree hb and I was always told I would need a pm. I got my first pm six months ago at age 33. I am still struggling with feeling tired all the time but I definitely notice the difference when exercising. I live in Colorado so the mountains and hiking are a way of life. That's when I notice my recovery time is so much faster when I'm out of breath. I never passed out and my hr always dipped down to the 30. Because I was born with my hb and never knew any different, I didn't realize I was slowing down and not feeling right. If you are having symptoms than go get a pm. May I ask what you were diagnosed with?

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