Complete heart block

My son was diagnosed with complete heart block at age 9. He got his pacemaker at this age. He has been ok until he had to have his leads taken out and replaced almost 10 years later. At 19. That was a rough procedure due to the tissue stuck in the wires. His surgery was done at Bostons children's hospital. We took him there because we heard it was one of the best. It's been almost a year 1/2 since the lead extraction and now his Ejection fraction falls between 40 and 45. I suppose this is from his pacing over the years. They are saying that if the numbers drop that we would need to consider Cardiac Resynchronization therapy meaning they would have to go back in again. I'm scared and wondering will he be ok with that procedure? Will he be able to live a normal long life? Does anyone know about this? Any advice would help. Thanks


4 Comments

Cardiac Resynchronization

by Lavender - 2023-09-12 22:16:37

Hi. I'm sure this is so hard on you, mom. I'm a CRT-P wearer. That means my pacemaker is a cardiac resynchronization therapy pacemaker. It improved my ejection fraction to normal. I live a normal life. 
 

Your son already has a couple leads, I surmise. I have three leads. I'm guessing they just add a lead for your son and replace the device with a CRT-P. He already has the pocket for it. I don't think it would be difficult. 

Your previous post

by Lavender - 2023-09-12 22:19:30

You asked about all this last May. Please copy and paste this so you can refresh your mind with the answers already given:

https://www.pacemakerclub.com/message/41983

Your son's ejection fraction isn't terribly low yet. How soon are they recommending this? Last year you said they were ready to do this then. Just because he had a terrible time last surgery doesn't mean it will happen again. This is less complicated than lead extractions. 

upgrading to CRT

by Tracey_E - 2023-09-13 09:49:23

It sounds like the surgery that was difficult was extraction? With CRT they won't take out what he has, they will add one more lead. Now one ventricle is paced. With CRT, they add a new lead to pace the other ventricles so it forces them to stay in sync, which is easier on the heart and can increase EF. The surgery is nowhere near as complicated as the extraction. 

I also have CCHB. I'm older than your son so didn't get my first pacer until my 20's. I'm 56 now, healthy and active. I have been told repeatedly by every doctor I've ever had that my condition and pacing will not shorten my life. The pacer more or less fixes our problem, and we are closely monitored so if anything else crops up (like reduced EF) we will catch it early and treat it. If we have to have a heart condition, we have a good one. 

it is all good

by dwelch - 2023-09-19 02:19:31

I am a parent myself so I can tell you it is going to be fine, he is normal, he will be normal, you do not have to worry.  Yet you will worry.

I also have CCHB, found pre-teenor so.  This was a long time ago now.  Doc watched it and I got device number one at 19, age of your sons second.   Note, I suspect the lead replacement was because he grew and leads do not stretch.   He should be on his adult leads.  I am 36 years into this, on device number five.  I have leads that are that age.  So far, knock on wood, no leads removed.  Doc did break a lead on the first replacement so my second oldest, active lead is 29 years old.  And then I have a fairly new one that is a handful of years old as I have a biventrical pacer now.

My EF was always mid to low 40s when we started looking and then over decades drifted into the mid 30s.  If you are talking EF then they are probably already doing an annual ECHO?  if they moved leads and stuff then if they were doing RV pacing I dont think it takes effect that fast, but im not the doc, just been told a lot of things over the decades.  At some point in the IMO 15-20 years with devices range or maybe that is with that specific RV lead, they should start doing ECHOs unless they are doing it already every year.  This is how they keep track of it, it is par for the course for us CCHB folks that have a lifetime of pacers.  It aint no thing, take your shirt off they goop you up with that jelly and look around then done for a year.

So I honestly didnt know this term Cardiac Resynchronization therapy.  But I have a CRT-P device.  I just call it biventrical.  three leads.  and it helped in my case.

If they watch it they can certainly decide to extend to the next device for the change, it is a third lead.  I fortunately had room for four leads.  there are ways to get three in there, no worries, you dont need to worry.   He will be getting devices every 10 years or so.  the last two may have been tough recoveries, maybe not, but if you read around you find that Tracey and other folks like me/us that have been doing this a while are driving on day two or three (even if we are not yet sleeping through the night).  I tend to wait until the monday after, and then drive to work that day (yep within a week back to work, even though I am not sleeping through the night).    At the time recovery sucks, but it is a few months out of several years to a decade or more between devices.  it aint no thing.  He is going to have several devices over his lifetime and/or break through tech will change that, even if it is a device every 10 years, we have folks here that started in the 60s or 70s and lost count of how many they have had.

Again I rode out the mid to low 40s across three doctors, ECHOs every year for I cant remember now, over a decade.  We timed it poorly and had to cut number four down to like 3 or 4 years.  I had skipped the stress test for  a year for reasons beyond my control and that was the other thing, once the ef got under 40 then stress test to tell the doc if the pacer would help (I love the stress test folks (not) bring shorts and stuff, oh wait you have  pacer and we have to do a chemical stress test, yes didnt you read my record even once or even that I indicated that?)   So in my case it accelerated to number five quickly.  mid pacer cycle.

Just saw someones post about 30 some years and a small number of devices.  my average kinda sucked two at 7 years one at 3 or 4 and only one that got a good stretch on it, hopetully this one will to.   

He will be the youngest patient.  I am in my 50s I am still the youngest patient.  I dont know how old you are but as older comedians will say, eventually the docs start to say "get used to it"  except the cardiologist,  well we would rather not move over to the right if we can avoid it we will try to get this fourth lead in on the elft.  "we want to preserve the right for the future"  Im mid 50s, 30 years into this and they are preserving the right for the future!  love it.

I dont know if anything we say can ease your concerns, you have been dealing with this half your sons life.  HE IS NORMAL.  complete heart block is the one bad medical thing you want as it is trivial to completely fix with a pacer.  I was SUPER active before my device, to the point of I should be very dead, just about everything I did should have killed me pre-pacer.  and that didnt stop me after of course why would it, now I CAN do all those things, bmx, vert ramp skateboarding, snowboarding, etc.  The only iimitations with a pacer he will have are jobs where the corporation is afraid. like he likely cant work in the power generation or distribution business.  even though he would have to hug the transformer their lawyers would probably just say no.   maybe a few other things, pro football if the device is on his shoulder like most of us. (something that the device will take a lot of blows, the device is not the problem it is the skin, I have taken two or three very hard hits, luckily only bruising and it was fine, did not cut the skin, hurt like hell)

--------------

mid to lower 40s is the story of my first two or three decades of my pacer life.  

a three lead is just as easy to live with as a two lead

so what if he has to go in for another device mid cycle.  he will have several devices over his lifetime the pocket will hold up for decades.  he is on his adult leads, nothing is perfect but expect those to last for a couple decades at least (my one lead will be around 40 or so next cycle, doc is starting to think about replacing it)

CHB congenital or not is one of the best big bad conditions you can hope for as it is trivial to make you normal in a way that is not a hinderance.  

We have had a few rare teens here, and honestly I dont know what his childhood was like, but if he was teased in school for this, those 10 years were and will be the worst of his whole pacer life and those years are behind him now.  its easy from here.

find a doc you trust, trust the doc you find.  help him transition into adulthood with dealing with insurance and talking to doctors himself, etc.   He is going through this in the best time possible as you have this site with a number of CCHB folks in particular one who is very educated and active here (not me, lol).  Including, if he chooses, to particulate on this site as this site could use some first hand child to adult experts.   and you figure out what you need to do to ease your concerns.  so far I am not hearing anything that concerns me about your sons condition or treatment.

 

You know you're wired when...

You can hear your heartbeat in your cell phone.

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