New pacemaker, lots to discuss..

Hello.

My name is Robert and I am 27 years old. I just a pacemaker put in 2 days ago. I was born with congenital heart disease (transposition) and had the pacemaker put in due to sick sinus syndrome. I have been reading stuff on these forums ever since I found out I was getting one to try and learn about what I could expect. I have a few questions and things I want to talk about and this community seems like a great resource.

So right after I got my surgery I started feeling this fluttering in my chest. It felt like a fish was out of water and flopping around in my chest. It also felt like someone was squeezing my heart and would take my breath away for a moment. I went and saw the nurse today and she adjusted the minimum rate from 60 to 70 and that seems to have made the problem a lot better. Did anyone else experience a feeling like this when they first got their pacemaker put in? How many times did you have to adjust your settings before it felt "right"?

One thing I could not predict would happen is the amount of anxiety I would get over this thing, especially when I was having the problem I just described. For the last day I keep getting struck with thoughts like "why me, why do I need this" and "this isn't right, it isn't natural. A computer is controlling my body". I was looking forward to getting this in so I'd stop feeling lightheaded and tired all the time. But now that it's in I keep getting the feeling that I just want it out, that I'd rather just deal with the symptoms I was used to dealing with for years rather than deal with new ones. Did anyone else have a hard time with anxiety when you first got your pacemaker? How long did it take you to get used to it?

Thanks for reading.

3 Comments

Welcome

by Grateful Heart - 2014-08-28 02:08:13

I also have SSS and a few other abbreviations.

My original minimum rate was set at 60 too. After a few months, I felt like I couldn't take a full breath. My Cardio sent me to the EP and he adjusted it to 70 which felt much better for me too....but we are all different.

It is common to need some other adjustments as you progress, especially being young and active. As your PM settles in and the swelling goes down you may find you need another adjustment. Just go by how you feel, you'll know when it doesn't feel right. I've had a few other adjustments over the past 5 years.

As far as your anxiety, like Tracey said, some is normal. Most of us are shocked (no pun intended) when we are told we need a PM.

Matters of the heart. The heart is the nucleus of our being. Sure, we need other organs to survive but you would never say....my lungs are breaking or....... my kidneys are filled with joy or....I love her with all my liver. So the heart has many meanings to us, physical and emotional.

It may take a little time for your heart and settings to adjust and sometimes a little longer for your mind to adjust but you will get there.

Like getting through everything else in life, knowledge, a sense of humor and a good attitude are very important.

You have found a good site. We've all been there.

Grateful Heart

anxiety

by Tracey_E - 2014-08-28 10:08:43

Some anxiety is normal!!! I found that as I felt better, as I got back to doing regular things and being active, I thought about it less and less. I was 27 when I got my first one, also! That was in 1994 so I don't remember a lot of details, but I rarely give it a thought, have not for years. It's just a part of me. I'm healthy and active, that's what I focus on.

A computer is not controlling your body. A little computer is there to jump in and help when your heart slacks off. That's it. It makes the signal, your heart responds to that signal by contracting and beating. It's still all you. It's weird... people take medications, often dependent on them like insulin, have joints replaced and get pins when they break bones. They think nothing of it. When it's the heart, suddenly it's awful. It really isn't much different. Technology is pretty cool when you think about it. Focus on feeling better, the rest will fall into place.

If you are not feeling 100%, ask to be seen. Sometimes the settings need adjusted multiple times, that's perfectly normal. The settings they send us home with are nothing but a good guess. Most patients are considerably older and sedentary. We are more challenging, so it takes a few tries to get it right. They prefer to make the changes in small increments, that way if it's not right there is less scratching of heads wondering what part to change back.

welcome

by judyblue - 2014-08-29 10:08:50

I really like what Grateful Heart said. Our heart is our center, when it is disturbed it's impossible not to be deeply affected. I am still dealing with issues 11 months later. I did not have symptoms before the day I went into the hospital with bradycardia. I came out with the pm. Shock, anger, anxiety, fear were daily. I wanted it out too, but everyone here continued to remind me it would not be in there if not needed. (I went to zero twice in the hospital). Today is better, but I am not where I want to be. But I keep showing up for life because I don't like the alternative!
Hang in there and keep us updated.
Judy

You know you're wired when...

Your life has spark.

Member Quotes

My eight year old son had a pacemaker since he was 6 months old. He does very well, plays soccer, baseball, and rides his bike. I am so glad he is not ashamed of his pacemaker. He will proudly show his "battery" to anyone.