Pregnant with pacemaker

having a baby with CCHB

by Tracey_E - 2018-02-25 22:18:46

I too have CCHB and had two babies after I was paced. I had perfectly normal pregnancies and deliveries. My girls are both in college now, both healthy. My oldest is the competitive one, does Crossfit with me and convinces me to run races with her. I draw the line at anything longer than a half marathon, I'm hoping that if I ignore her long enough she'll shut up about doing a full. My youngest is the adventurous one. I'm going to see her this week, we will ski and she said something about hiking which worries me a bit because she lives in the mountains where there is a lot of snow so I suspect what she really means is she's dragging my butt snowshoeing. Last summer when I visited her we went ziplining and on an Olympic bobsled. I may have gone a little overboard trying to raise active, health-concious kids. The brats have no respect for my age and heart condition! lol Point is, I am not defined by my pacer. I'm more active than many of my friends and there is nothing I want to do that I cannot. The pacer is nothing more than a tool to give me a full, active life. Don't give it more power than that. 

A few random thoughts...

I think a little tachycardia is normal with us, I get it also. Our hearts spent a lot of years beating out of sync so sometimes they get a little crazy. As long as it's regular beats and not too fast, it's all not a problem. 

CCHB is not genetic which means our kids have no more chance of getting it than we did. (it's very very rare)

Once we are paced, we have a normal heart rate. Our hearts are structurally normal, there's just an electrical short circuit between the atria and ventricles. If we have to have a heart condition, we have the best one because it's a simple fix for the pacer to make sure the ventricles keep up with the atria. That means we can have a normal, healthy active life and there is no reason to think this will shorten our life expectancy.

We spent most of our lives with a heart rate that didn't go up like it was supposed to. Going up on exertion is NORMAL. It'll feel weird for a while, but this is what the heart is supposed to do. When we exert, the body needs more oxygen to support the activity, so the heart rate goes up to pump more oxgyen throughout the body. Before we were paced, this didn't happen because the signal was blocked between the atria (which beats normally) and the ventricles (where the strong beat we feel as our pulse comes from) and it was hard on our bodies. Our organs needed oxygen that they weren't getting. Picture your organs being flooded with oxygen when your rate goes up. It's a good thing! 

You've gotta force yourself to stop checking your pulse! It will seriously make you crazy. Trust the pacer to do its job. It's a high tech computer, much more dependable than our wonky hearts. Resist the urge to count your pulse unless you feel bad. 

I know it's easier said than done, but relax and enjoy the blessing that is your pregnancy.  If I'd been born the same year as my mom, I wouldn't have seen my 30th birthday much less been able to carry babies. Instead, I'm healthy and active and mom to two wonderful daughters. Insstead of struggling with fatigue and dizziness, you are looking forward to a baby. We live in an era of incredible technology.  We've been given a precious gift. 

If you ever want to chat with someone who's been in your shoes, I'm around, feel free to send a private message any time. It will all be ok! 

Pregnant with Pacemaker

by SCooke - 2018-02-27 19:50:28

I’ve had a pacemaker for as long as I can remember, I got my first implanted in 1997 for AV block. My daughter is 2 and perfectly healthy, as am I. Much like you, I had gotten so obsessive about checking that it was hard to enjoy my pregnancy when I had so many thoughts in the back of my mind. My biggest hurdle was putting my trust into my medical team. Most of them I hadn’t met until a week before delivery. I ended up being induced and having telemetry monitoring the whole time until after delivery. All I could do was put it in the hands of my doctor. Everything went perfectly fine. I asked as many questions as I could as plans changed for delivery, freaked out when they mentioned my daughter had a murmur and forced them to give her multiple EKGs before we left the hospital, shocker for me was that almost babies are born with a murmur, would’ve been nice to know before hand. I don’t think it gets any easier to be honest, you just have to have trust in your doctor, and never be afraid to get a second opinion. Enjoy feeling that little life inside of you every chance you get