25, nervous, & 2 weeks away from surgery..

Hello all! This is my first post here so bare with me.. I'm struggling with accepting the fact that I'll be getting a pacemaker at only 25 years old. I have congenital heart disease.. more specifically born with an atrial septal defect which was surgically corrected via open heart surgery when I was 1 1/2 years old. Ever since then I've been dealing with symptoms resulting from bradycardia even when I do something simple such as walking.

 

I was so young when I had my first surgery but now that I'm an adult that's fully aware of everything.. I've been crying and doing my best to cope. But it's hard. I trust that the surgery will go well. However it's hitting me that this is something that I'll be dealing with for the rest of my life. I've been supressing emotionally just how my heart has been taking a toll on my life. And with this surgery coming up.. I can't hide from it anymore. 
 

If anyone can give me some insight on how their pacemaker has affected their day to day life positively.. I would like to hear it. Don't get me wrong though.. I'm grateful for this opportunity and excited to have less limitations. It's just one of those nights where I'm overthinking everything. Bless you if you read all of this. 


5 Comments

Adjustment

by Theknotguy - 2019-10-25 11:17:32

It's really hard to go from not having a foreign object in your body to having to depend upon it for living.  It's especially hard when you are younger and don't have life experiences with which to compare.  So I can really understand how you feel.  

Transition for me was a lot easier.  I woke up from a six day coma with the pacemaker implanted so I didn't have to go through the angst of waiting for the implant procedure.  Waiting is the hard part.  Also, I did computer repair, network installation and support for 35 years so the idea of having to depend upon a small computer like system didn't bother me.  I did have to adjust to depending upon this piece of machinery to keep me alive - and that took some time to get my mind wrapped around the thought. 

Post pacemaker implant my life got a lot better.  I had been depending upon an irregular heartbeat for years will the occasional fainting spell due to my heart slowing down whenever it felt like it.  Post pacemaker I remember thinking, "So this is what it feels like!", because for the first time I could remember I finally had a steady and regular heartbeat.  

The first thing I noticed was that I was finally warm.  The steady, strong heartbeat meant better circulation and oxygen to my body so I didn't always need a sweatshirt, coat, or blanket to keep warm all the time.  Second thing was that I could finally stay awake.  At the last before the pacemaker, as soon as I sat down, I'd almost immediately fell asleep because I felt so tired all the time.  I could finally stay awake during the evening news.  

The biggest thing was more stamina - which meant more exercise - which meant I felt a lot better.  I volunteer at a charity wood shop where we make furniture for homeless people so they can get back into a home or apartment.  For about six months I'd work for a couple of hours and go home.  Then the next four days it felt like someone had wrapped my pacemaker in sandpaper and scrubbed it around.  Lots of Tylenol with hot and cold packs.  After six months I could keep up with the other guys.  On Thursdays I work with the cut crew and we move about 2000 pounds of wood while cutting parts.  With the pacemaker I can easily keep up.  I can go four to six hours of heavy work without getting worn out.  

After six years with the pacemaker I finally had to have an adjustment made.  The settings on my rate control were set too low and I was running out of air doing normal exercise.  Turns out my body had finally gotten strong enough that the pacemaker couldn't keep up with the settings it had.  My EP had me do some tests, then it was back to the pacemaker tech using the fat laptop.  A few taps on the screen and my new settings were in place.  I went seven hours yesterday full speed.  

Are there adjustments?  Yes there are.  I feel the most important thing is your attitude.  If you feel you can do it, you will.  So it's best to get into the frame of mind that your pacemaker will help you instead of hinder.  If you look around the forum you'll see a lot of people with pacemakers living a "normal" life with the only limiting factor being their lack of imagination.  Like my EP told me before they made the last adjustments, they don't see too many people with pacemakers who walk three to six miles a day, then turn around and move 2000 pounds of wood on another.  He was happy to make the changes.  

I wish you the best with your pacemaker after it's implanted.  I hope you have a smooth transition into your new life.  
 

My Opinion

by Piggers365 - 2019-10-25 11:20:44

Hi

I am 27 and had an ICD fitted 3 months ago. I have a HCM, A hereditary condition passed down from my farther. 

The surgery is simple and over very quickly. There is not much discomfort and post surgery I realised that a lot of my worries about the procedure where in my head. 

 

Recovery period is understandably frustrating at times  but once you are through the first week things get a lot easier. 

As for aesthetics. The pacers are fairly small and cant be seen when wearing 95% of clothing. 

You will be fine and you will have a better quality of life for it. 

 

Good Luck 

before and after

by Tracey_E - 2019-10-25 12:19:00

I got my first one at 27. I'm also congenital, tho I have complete heart block rather than ASD. Blake, the site owner, has his pacer for the same as you. He isn't here often because his family life keeps him busy but he's active and doing great.

I found the surgery was easy compared to what I'd built it up to be in my head, and after I felt better than I ever could have imagined. That was 25 years ago and I haven't looked back. I went from tired and dizzy all the time because my rate was too low to full of energy. So for me it actually let me go from always having to work around my heart condition and it always being on my mind to being able to forget about it. No more struggling to cope. I really don't give it a thought most of the time. I have a home monitor that checks in automatically so I only have appointments once a year. I've killed a few batteries and had one lead that needed replaced after 15 years. The rest of the time I live my life. There's nothing I want to do that I cannot.

"Better" is coming

by Gotrhythm - 2019-10-25 15:32:41

We've had a rash of posts from people in your age group just in the last week or so. I urge you to scroll down what other young people have written. You will see that you are not alone. Your fears and worries, and hopes, are shared.

Most people feel much better once they get their much-needed pacemaker. Like you I had been living with bradycardia and I could hardly believe how much better I felt.

Even groggy from anesthesia, I could tell I felt better than I had felt in a long, long time. Indeed, I realized I had forgotten what "good" feels like.

It might be good for you to remember that millions of people all over the world, from tiny babies to ninety year olds live with pacemakers. Once you have one, and experience the difference it makes in how you feel and how much more you are able to do, the thought of having a pacemaker the rest of your life won't bother you at all--it will seem like a really good idea. :-)

 

 

Newbie too

by Heid-i - 2019-10-25 20:17:37

I was in the same boat as you not too long ago!

I'm 22 and I had my pacemaker surgery only a week ago so I can't yet tell you how it will affect my day to day life yet.. but I cant tell you you're certainly not alone! 

I have severe complete heart block with no family history or diagnoses as to why it's happening to me at only 22, I have never had any other health concerns and other than my heart deciding it just doesn't want to do it's job I'm completely healthy. That's why it hit pretty hard when I got the news..

The waiting game is actually worse than the surgery and the recovery all together and the over thinking was my biggest enemy. On my appointment day (after already waiting too long because the surgeon took leave) I waited at the hospital after building up the courage and was ready to go and at the last minute they had a flood of emergencies and sent me home due to a lack of beds at my local hospital. 

So the waiting continued for way too long again due to public holidays! 

Now I'm FINALLY in recovery I feel so relieved and like a tone on weight has been lifted off my shoulders! 

I feel like once I'm healed I can finally get back to my life without the worry and the over thinking that I was doing prior because that was easily the worst part! 

I hope you can have a little piece of mind knowing you're not alone and it will be okay because I understand what it's like to be young and not really have anyone around that's walking in your shoes to relate to 

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