My story, I wanna hear yours, please :)

I am a 35 y/o female born with congential 3rd degree heart block AV dissociation, because my mom had lupus. I was also born with neonatal lupus. I am a mother of 2 children 3 y/o boy and 1 y/o girl. I had my pacemaker implanted @ 18. I lived in 3rd degree heart block with no pacer for 18yrs. I got the pacemaker for demand purposes only. (Now i am using it all the time) I had no episodes (fainting, passing out etc). I also have my original lead (1 lead) since I am 18. I had my generator changed in Dec. 2015.  

In may of this year, I had an episode that when i walked up stairs got to the top I bottomed out.. I was in the 40-50's. when placed on the monior they believed it was artifact... I have my own intrinsic heart rate which is in that range. Why I was in that range with the pacemaker im so confused? And they keep seeing noise on my atrial node lead, but my lead impedences are good?

 

Am i having atrial dysfunction now? I work out I take care of two babies, i was gonna try for a third?

 

If you have third degree heart block, what kind of pacemaker do you have? What are controls set at ?

 

TIA


6 Comments

Third degree heart block

by grilor - 2016-09-29 14:54:40

I found my third degree heart block when I was 25 in a nursing class where I was hooked up to a moniter. I am 45 now. The doctors believed it to be congenital. My heart rate as low as 36 to as high as 50 at times. I was never symptomatic. I did get a pacemaker September 12 of this month. Mine is set at 60. My atria is paced 8% of the time and ventricle is paced 100% of the time. I cant answer the questions except I wonder what your low rate is set at. My pacer is Medtronic. I am interested to hear what you find out.

Response

by soprychd - 2016-09-29 15:26:59

My settings are 40-180. When I run I can get up to 180. and when I sleep w/o pacemaker i go below 40. The reason why i got the pacemaker to begin with.... they didnt want me to go below 40. I did have a medtronic and it was fantastic and lasted me 12 years. Now I have a st. jude and im blowing thru them. what kind of pacer do you have.  I have one lead which my sa node fires to a node in my atrium and fires down to my ventricle .... My EF is 50-55% and they believe it from being paced. I have had to healthy pregnancy and babies.

My story

by Good Dog - 2016-09-29 15:43:05

I was born with a 1st degree block that went to 3rd degree a month after I turned 38. My parents tell me that I had some passing-out episodes as a child that I do not remember. I am guessing that my 1st degree went to 3rd degree at times although I was not aware. I had extensive testing done when it was discovered that I had a 1st degree block in my 20's. They determined it was congenital. My heart rate dropped to about 35 when I slept long before I received a PM. They determined that with a holter monitor.

After receiving my PM I began working-out and participated in very competitive sports in my 30's and 40's. My PM max was set at 120, but my heart always exceeded that and worked very well on its own when I was working-out. I felt good also.

Flash forward 30 years. I am on my 4th generator and still have my original atrial lead. My ventricle lead was replaced in 1995 due to a recall of the original. It was capped and left in place. So I now have a 30 year old lead and a 20 year old lead. I am doing great.

I think that your episode at the top of the stairs could have been any number of things that are unrelated to your PM. I really doubt that it could be atrial dysfunction as you proposed. If you feel good now that is all that matters. My pacemaker is a Medtronic dual chamber. Always has been Medtronic. My Max rate is 120 and my minimum rate is 50 bpm. I do not use rate response. I don't need it.

Persoanlly, I think you should get on with your life and have another child if everything has checked-out O.K. with your PM and your health. Your episode could simply be an anomaly and you should treat it as such if they cannot find a cause.

I wish you the very best and hope you can go on with your life and enjoy it!

Sincerely,

David

CCHB

by Tracey_E - 2016-09-29 17:22:10

I have CCHB also. It's common to pace all the time. By definition, we are in block all the time so that would make sense to pace all the time. 

My two kids are in college. If you want another and your doctor is good with it, go for it :)

The episode could be something weird going on or the monitor or a one time thing, who knows. What was the pacer doing at the time? When they download they should be able to see. If it just happened once, no big deal. I developed some minor sinus issues over the years, but the pacer takes care of it so it doesn't affect me. Unlike most with CHB, I use rate response, particularly when working out. I have no idea what the settings are but know it's fairly aggressive, my rate jumps right up as soon as I get active now. My upper limit is 190, I regularly get to 175-180 when working out so that gives me a cushion. 

Noise but good impedence means the lead is showing some wear but still working. I had one do that, also, the insulation was ruptured so it was like running the AC with the window open. The house cooled but the power bill went up (aka battery life was shorter). We watched it for 5 years before doing anything about it. They capped the bad one and added the new one when I had a generator replacement, easy. My other original lead is still going strong. 

 

My Story

by FaithGrace - 2016-09-29 18:06:48

I am a 47 y/o female with 3rd degree heart block.  I had my pacemaker implanted in August 2016. 

 My road to my Pacemaker started when my regular doctor heard a heart murmur and sent me for an Echo.  The Echo showed that I had mild to moderate regurgitation in my Mitral & Bicuspid valves and I was referred to a Cardiologist.  The Cardiologist wasn't too concerned with my valves, however he did an EKG while I was there and found my Complete Heart Block.  He then referred me to an Electrophysiologist.  

A consult with my EP and a few tests later (along with some tears, fears and a LOT of prayer) it was recommended that I have a Pacemaker implanted.  I did not have any episodes (fainting, passing out etc).  I have had dizzy episodes for much of my life that I thought they were due to low blood sugar.   After all the testing, I was told that I did not realize how terrible I was feeling and that I would feel so much better with a PM.  My heart rate only got to about 71 during my stress test when it should have been at 150+. 

So here I am, with my new little personal Heart trainer.  I know my bottom number of my pacemaker is set to 50 bpm.  It was originally set for 40 but I was getting dizzy and hot with that number.  My top number is at least 150 because I've taken my pulse after exercise and gotten in the low 150's.  I will have to ask what the number is at my next visit.  I was told that my PM rate increases with movement so I think that means my rate response is turned on.

I have a Boston Scientific dual lead pacemaker, paced less than 1% in the atriua and 100% in the ventricles.  I'm sorry that I am unable to answer your other questions!

 

 

My story...

by IronWoman - 2016-10-11 02:42:19

I will be 42 in a few days and female. I began feeling I'll in July of 2016. I was vomiting and very fatigued, along with a headache. I saw my GP who sent me home with a "migraine." That night, while getting up to let the dog out, I passed out, damaging my ankle and leg. The ER dx'd it as syncope and sent me home. Over the next month, the dizziness, weakness, repeated fainting, and vomiting got worse. I was bed bound. I lost 20 lbs im 30 days. I saw my doc again and she sent me to a cardiologist. An echo came up normal, but ortho static bp checks showed that my heart rate shot up to 139 and my bp wasn't detectable upon standing up. I went home with a Holter monitor for 2 weeks. During this time, I continued to have the low bp and hight heart rate on standing. One night, I was up vomiting all night. The next morning, my cardiologist called to tell me that I had flatlined 7 times over night. It was decided that it was happening when I bear down. She ordered a pacemaker for me. I was fitted with a Biotronik Eluna with two leads. I have complete heart block with bradycardia. At first, I was set to pace at 50. I paced 32%of the time and still felt terrible. Now I am set at 60, with all 3 settings maxed. I feel better. Apparently I have had this all my life, but it suddenly got worse. I have always passed out when vomiting, but no one ever caught on.

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I just want to share about the quality of life after my pacemaker, and hopefully increase awareness that lifestyles do not have to be drastically modified just because we are pacemaker recipients.