Anyone else with congenital complete heart block

Hi everyone. I recently had my first pacemaker at 34. I was born with a congenital complete heart block which was due to my mother having lupus. Apparently a congenital CHB is rare so I'm hoping to find others that have this (1 in 22000 births). Most people get a pacemaker in childhood, however even with a slow heart rate 37-42bpm most of my life I have only just become symptomatic and in need of a PM. Extremely tired, dizzy, can't concentrate, weak can't do any exercise.

Ive only had my PM a week and don't feel any better. Actually worse. My EP said it will take a while to get the settings right. Does anyone else have a congenital complete heart block (from birth) and at what age did you get your pacemaker? 

8 Comments

Hello TT

by NiceNiecey - 2017-12-27 03:12:35

Welcome to the PM Club.

There are any number of people in this club that have CHB, most notably our moderator.  I suspect she will weigh in after the holidays; her name is Tracy.  

By way of encouragement, you should know that there are members here that also felt worse after getting their PMs.  Personally, I felt lousy and wondered why I had it done.  In time, however, you should begin to feel better than ever.  You’re young and you will bounce back in no time. I had to constantly ask myself if I felt better than I did the week before. The answer was always yes so I waited patiently to feel REALLY well!  It will happen - in time.  

Please check back in with us and let us know how it’s going.

Niecey

me too

by Shell - 2017-12-27 17:51:25

I was born with congenital CHB also. I was probabaly diagnosed when I was 6 mos old. My mother was diagnosed with Lupus when I was 11 and it was a few years after that they made the connection with that and my CCHB. (I love teasing her now tat its all her fault) I also went a while before I got a pacemaker. (got it 11 1/2 years ago, turned 46 a week ago) Growing up I prob stressed out my parents but they let me do what I wanyed (well, with in reason) I played sports, was a cheerleader in high school and had both my kids before I got my pacemaker.

It may take a while to get the settings right and for you to feel better but it will happen. Just remember to speak up to your doctor.

Thanks so much Shell

by TTT34 - 2017-12-28 00:35:30

Thanks Shell I have lived with this my whole life and forgot about it because I didn't have any issues. I only recently found out how rare it is for CCHB from birth. I live in Australia and there would only be around 12 babies a year born with it here. The majority get a pacemaker in childhood. My EP said due to part of our electric system never working and getting it to work over night can cause complications (heart failure). So I've been anxious. But I have a great EP and he did a relatively new procedure and placed one of the leaded in a different spot to be as closed to my natural pacing system. Cross fingers I get the setting right so I don't feel like a 90yr old. 

Did they have to adjust your settings a lot? How long did it take to get the right settings. The biggest mistery is how we could go so many years and getting symptoms out of no where. 

Thanks so much for your message. Take care

Thanks Niecey

by TTT34 - 2017-12-28 04:49:39

Thanks for your words of encouragement Neicey. I'm glad I found this site. 

CCHB

by Tracey_E - 2017-12-28 10:16:12

I, too have CCHB. got my first pacer at age 27 in 1994. They didn't pace kids when I was diagnosed unless it was life threatening. I was mildly symptomatic all my life, it got pretty bad the last two years before I was paced. Now, I'm healthy and active and can do whatever I want with no symptoms. Other than once a year check ups, it rarely affects my day to day life. 

It sounds like you have HIS bundle pacing. That's great! It's easier on the heart than the older way of placing leads. Yes, it can take a few tries to get the settings fine tuned, but you shouldn't really feel worse. 

settings

by Shell - 2017-12-28 16:56:55

I honestly dont remeber how many adjustments i needed since it's been so long. i dont think to many. In fact, when they did the operation for my first pacemaker after the doctor said I may have been ok for a few more years without one. I think I was just so accustomed with my heart rate being slow my body compensated for it. I did have more energy after. 

I am on my 3rd one because i had a bad lead the firsttime. (which I think my have been my fault, think I stretched too far with my left arm too soon after getting it while on vacation) 1st one lasted 4 years, 2nd about the same. With the 3rd I got a new lead. I've had it 3 years and my last check up it said 9-10 years left.

I have CCHB

by mbolido - 2018-01-06 15:10:15

Hi! Same here and I’ve had my pm since I was 6 months old. Glad to meet others I can relate to. 

Me too

by EilishBow - 2018-12-11 15:15:17

Hey I know this is an old thread but it’s nice to read posts from people similar to me. I also have congenital (complete) heart block. I was diagnosed when I was 11 and now am on my second pacemaker which I got 2 years ago. I’m 22 now, and have just graduated as a paramedic. Life is strange and it throws annoying things at you, but I feel more comfortable knowing I’m not alone. Hope you’re all well xx 

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