Still adjusting

Hello everyone! I am so glad I found this site. I am 30 years old and had my dual chamber pacemaker installed on May 16, 2013. It was not an expected procedure at all! It started when I was diagnosed with an ASD at 24 yrs old. I had traditional open heart on Sept. 30, 2009 to close the hole, and all was well...I thought. Turns out they say I "short circuited" my electrical system. Still not quite sure what that means. I had about 3 ablations and was told I would need a pacemaker "someday". I became used to dealing with the low energy and fatigue. I would still workout and run the best I could. Then a few months ago I realized I was getting lightheaded and dizzy much more often. I went to see my new cardiologist who put me on a holter monitor (gosh I hate wearing those things!) haha. He wanted me to wear it for 30 days! Exactly one week after I started wearing it I transmitted my info over the phone like they told me to and went to bed. I was woken up about hour and half later from the monitoring center telling me I needed to have someone drive me to the ER right away. They could not tell me why. When I got to the ER they admitted me and said my heart rate was about 42-43..not so good I guess. I was sent up to the cardio floor for the night. I was then taken to ICU because my heart rate was going down to 35-37 beats.
Short story doctor said I had no choice and they put a dual chamber pacemaker in. I felt amazing after being released. I had all sorts of energy and it felt like a whole new world!
Problem is now all of the sudden I feel lethargic and tired and just plain BLAH!. It has been about 2 months since my procedure and I was wondering if this is a normal feeling? I wonder if it is a physical problem or a more mental thing. Has anyone ever experienced this before? I figured since I was able to make it through a tough open heart recovery, this would be a piece of cake. But it is SO different! Any suggestions or words of advice? I do not know anyone else who has a pacemaker and have no one to really bounce things off of. Thanks everyone!
So glad to be part of a group :)

5 Comments

In common

by ohiolaura - 2013-07-23 11:07:41

We have something in common,I was born with a septal defect,which was closed when I was 4 yrs old.
Then last July,my circuitry went out,all of a sudden,and I wound up with a PM.The EP I have,which I like,told me that he thinks that 45 years ago,during surgery,maybe the surgeon knicked my stuff,therefore causing me to short circuit,I don't know,if I believe that was possible.
I think I just got another kick in the rump,like I needed it.Whatever,nothing could be done to avoid any of it,so Ive just done my best to move along.
Im older than you,and was in good shape when this crap happened last year,and let me say it kicked me in the butt.I thought too that I would be back to what I was,and I wasn't.
It took awhile,I had to be patient,and go slow.I did,and am good now.Id say not to expect to be back to what you were,I know its different for everyone.
Bouncing stuff off people I think is a great way to recover both mentally and physically..........I know I started to turn the corner at 6 weeks after surgery,and from there it just got better,but it was slowly.
I really think for me 6 months was key,wish I would have kept a journal,now I cant remember it all so clearly,age!
If you want to chat about any of this,feel free to send a message,youll get there,dont worry!
I was a mess in the beginning,and now,well, I have much more information,faith and strength,in many ways.
Keep going!
Laura

Thanks!

by kanemcauliffe - 2013-07-24 02:07:15

Thanks Laura I really needed to hear that! I think the first few weeks after surgery I felt so good because my body had never really had that much oxygen and my heart rate was so good. I think I was on a high, and now I'm starting to adjust..bummer haha.
I have a hard time being patient and I think I was expecting to be right back to how I was. I'm trying to remind myself that it is okay to be patient and let my body recover, but it is very difficult.
Thank you for the hope that it will get better, and I need to just let it happen. I really appreciate it. I will definitely send you a message if I need future reminders :)
Thanks again,
Maura

I'd add to the comments...

by KAG - 2013-07-24 05:07:03

.....that while it is an adjustment getting used to the PM that for me what really helped the most was getting to know my new buddy. Everyone's different on how much info they want but I think many find it helpful to understand their PM and what the modes and settings are. It may not always be you needing to adjust to your PM, but your PM needs adjustments to support you.

You're on a great site to ask questions and get help to understand your PM. I know I did.

Hang in there
Kathy

still adjusting...

by lubro - 2013-07-24 11:07:13

Hi Maura,

When I first came to this site, I was scared, confused, wondering if I would ever feel "normal" again. Someone posted "welcome to the new normal" Somehow, that made such sense to me. What is normal? I have had my PM for about 6 months now, and I'm beginning to see what the "new normal" is like. I sometimes feel little things that I never felt before...new normal... I sometimes get short of breath from doing something I did easily before...new normal...Am I missing a beat here or there?...new normal...lethargic days..new normal...
I think you will do just fine with adjusting to your "new normal"...Lots of support from all here who have gone thru and are still going thru their own "new normal"...
welcome to the club...

Lubro

Same here....

by Mcravenn - 2013-08-22 03:08:19

I am having the same issues with fatigue, but I also have shortness of breath and rapid heartrates most of the day. I have my pacemaker for a different reason, I have neurocardiogenic syncope. I did not realize I could not get back to my pre pacemaker normal, or will this potentially get better? Do any of you have trouble with rapid heartrates while resting or doing basic "everyday" activities? I am having a hard time accepting this will be my new normal, when they make it seem like life will be even better than before minus welding:)

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