Complete heart block - questions to ask

Hi

I am extremely grateful to have found the club in the midst of what seems like the darkest time of my life (I'm not an official member... yet). I'm a young, healthy (?) 33 yo, with two young kids, just diagnosed with an incidental finding of a complete heart block that looks to be congenital. Have had a low resting heart rate (mid to high 40s, dropping to 37 at sleep) for the last 10 years (Apple Watch tells me it goes up to 160+ with exercise), some fatigue (effectively treated with iron supplements) and 3 syncopes I can recall, years ago (one with exertion, two when at rest and unwell). Mentally struggling to come to terms with this diagnosis,  cannot go half a day without crying and worrying about not being there for my kids. 

I was discharged from the hospital after a clear echo and 5 days of monitoring with the message that pacing decision is not one they will make lightly given my age and the risks/benefits of pacemakers and status quo, and have an EP/cardiologist consult coming up where I expect further tests.

I've read a lot of studies through the sleepless nights of CHB risks such as sudden cardiac death, significantly increased risks of pacemaker complications associated with implants in younger population, but also some (rare) stories of asymptomatic patients well into their 50s.. 


Long story short (sorry!) I wanted to prepare for the consult with questions to better understand my particular situation and options as a novice - I figure those with lived experience could help - thank you very much for the input. 


13 Comments

Complete Heart Block

by Philli1 - 2023-08-08 05:47:35

Hi Pace 23

I completely understand how you are feeling. I was diagnosed at 57 that I had complete heart block. At the time I didn't know what this meant but now after 8 years I understand and I am reassured of a long future having been the recipient of a pacemaker and later an ICD. Mine came on quite suddenly and was completely unexpected. I went to the gym 4 times per week and was pretty fit. I had a cold and after that struggled to walk 500 metres without being breathless and dizzy. Pushed myself for over a week thinking I would get better but eventually the symptoms were so bad I took myself to the ED and after lots of tests I had a pacemaker installed which restored me to normal health and I soon went back to the gym.

I would have thought the drs. would be recommending a pacemaker but perhaps your situation is different to mine and because you are young. I can highly recommend the pacemaker as a great solution.

One important question to ask for complete heart block

by Gemita - 2023-08-08 06:05:06

Pace_23, firstly, I know we all do it, but reading risks and benefits can leave us feeling very confused, frightened and uncertain of the best way forward.  What might help is hearing from members with heart block who will tell you that they didn’t realise how bad things had gotten until they received their pacemakers and started to feel normal again.  

I won’t try to go against your medical team, but sometimes we do know ourselves best and I think it is important for you to listen to your body, to make a list of all your symptoms that have been troubling you recently and take these with you to discuss with your doctors.  In my experience, how you describe your symptoms will help your doctors to decide on the urgency of your condition and whether pacing support should be considered now rather than later.

If you have had all the tests to confirm you have a congenital condition causing heart block, then your condition is unlikely to improve.  A resting heart rate of mid to high 40 bpm would not be unusual but a sudden heart block occurring at any time, could be very dangerous and I personally would want the protection of a pacemaker.  Many members here have reported that they immediately felt better with a pacemaker when their heart block was treated.  I have a different condition (bradycardia/tachycardia syndrome) and have a pacemaker for syncope, pausing and bradycardia.  Living with a pacemaker has been easy, natural and beneficial even with my difficult arrhythmias.  My symptoms have improved and so has my quality of life.  I can thoroughly recommend a pacemaker to anyone with an electrical disturbance as being nothing but helpful.

You will be there for your children for many years to come providing you receive appropriate treatment.  I can understand without an indication for immediate treatment, your doctors may not wish to recommend a pacemaker.  However, my main question to them would be “how can we be sure that I will stay safe with a congenital condition causing complete heart block without a pacemaker to support me”  and see what they say?  Furthermore, you could ask whether your “complete” heart block diagnosis is actually confirmed, as well as the likely cause?  Sometimes heart block may be reversed if the cause/health condition causing it can be found and treated.  If however, congenital heart block is confirmed, then in my opinion it should be treated.

It is true that many patients live for many years with lower degrees of heart block but complete heart block is another matter and could become dangerous very quickly indeed.   Welcome and I am glad you have found us

just do it

by Tracey_E - 2023-08-08 10:33:05

I also have congenital heart block and had a low rate all my life. Biggest difference is mine was found when I was 5 and my rate didn't go up with exercise at all (why it was easier to spot) so I was always monitored. If you aren't looking for it, and have symptoms that can be written off as something else, it can go undaignosed for a long time.

I got my first pacer at 27. I should have had it 5 years sooner but I had doctors who wanted to wait due to my age. THIS IS A HUGE PET PEEVE OF MINE!!!!! Sorry to scream but ugh! I was terrified of the surgery and assumed my life as I knew it would be over so I was happy to procrastinate and didn't push for it. So we waited, then one day my rate tanked. It was 22 when I was admitted for emergency surgery. Being that slow, my heart could have easily stopped and not started up again. The surgery was easier than I expected and after I felt like a new person. And I was resentful that they let me put my life at risk like that all because I was younger than their other paced patients. 

You are too young not to feel good, not to be safe. The risks of not being paced far outweigh the (very small) risks of being paced. If they would give it to an elderly person with the same diagnosis and symptoms, it's completely ridiculous not to give it to someone young. You have passed out. We've had members wait and pass out while driving, so they had to recover from that at the same time as pacer surgery. IMO if you are passing out, it's past time to get it. 

I've been paced since 1994. I have never had a serious complication. Most of the time I forget it's there. I was shocked how much better I felt after! No one told me that having a heart rate so low (40's) was draining my energy. I felt the difference the minute I woke up in recovery. I had both of my children after I was paced. My oldest is a runner and we meet up several times a year for races, 2 half marathons and some shorter ones this year. My youngest is a park ranger so visits with her involve hiking. I start most mornings at the gym, kayak every chance I get, hike or ski most vacations. No one looks at me and sees a heart patient. 

If we have to have a heart condition, we have a good one. It's the easiest fix with a pacer because our sinus node- what is setting the pace- works normally. The signal gets blocked on the way to the ventricles, so the pacer watches. If the ventricle beats when the atria does, it just continues to watch. If it misses (block), it steps in and makes a tiny signal that mimics what the heart should have been doing on its own, the heart responds by contracting. Easy fix, as heart problems go. Our heart stays in sync and our rate goes up like it should. 

The thing with heart block is it almost always gets worse. Progression is normal. If your rate goes up with exercise, then your heart is not in block all the time now. When we are young, our body can cope with the lower heart rate and lower oxygen levels, but as we age it is harder on our bodies. Organs need oxygen to thrive, when our rate is low they aren't getting enough. So it's not a matter of if we'll need the pacer, but when. I'm 56 now. At this point what difference does it make if I've been paced 30 or 35 years?? None, except those extra 5 years I could have been feeling good. 

If you have any questions at all about the surgery, recovery, or living with it, or just want to vent with someone who has been in your shoes, feel free to message me any time. I promise this is just a small bump in the road, not a major roadblock. 

more

by Tracey_E - 2023-08-08 10:42:47

Sorry to keep babbling! 

Don't be suprised if they don't do more tests. Once they've seen the block on ECG, there isn't really much more to test for. The 5 day monitor will tell them how low you get and how much of the time you are in block. Some people do lots of testing trying to figure out why, but if we are born with it, it just is. They spend a lot of time and money to learn nothing new. It's a fluke, a faulty electrical connection we are born with.

The echo shows them if your heart is structurally normal. Usually with block it is, block is electrical not structural. Other than the short circuit, most of us have perfectly normal hearts. An echo confirms this. 

Seeing an ep is great. Most cardiologists are plumbers. EP's are electricians so pacers are what they do. Another option, depending how close you live to a large teaching hospital, is an adult congenital ep. Most ep's and cardiologists have very few young paced patients. Adult congenital specialists have lots, and they are experienced seeing people paced for a lifetime. It gives them a different perspective. It's a new field and you may not live near one, but if you do have access to this type of practice, I highly recommend it. 

To answer your original questions, I would ask

-how often are you in block

-how low does your rate get at night and how long does it stay low

-are there any indications of sinus dysfunction

-is your ejection fraction normal (EF is how hard the heart pumps, how much blood gets pushed out on each beat. This is what they are talkin about when they talk about pacing risks, this number can drop in a small percentage of people)

-if pacing is being considered, are you a candidate for the leadless? (leads are the weakest point in the system)

Pacemaker or not to pacemaker...

by AgentX86 - 2023-08-08 11:38:20

The risk of SCA with a heart block and a pacemaker is a lot lower than heart block without a pacemaker. The pacemaker just wires around the heart block.  Nothing else changes, except that you have a backup pacemaker in case yours stops (not a part of heart block).

Don't let Dr. Google ruin your life.  Ignore it, except for descriptions of the issue.  The statistics are absolutely meaningless.  Sure, people with pacemakers are more likely to die within five years (or whatever) because many, hanging onto life with their fingernails, get pacemakers.  That sorta screws with the statistics.  There are three kinds of lies.  Lies, damn lies, and statistics.

As Tracey said, "just do it". There are many (most?) here with a heart block.  It really is the solution to a serious problem, no matter what your age.

 

thank you

by pace_23 - 2023-08-08 11:55:56

thank you for the informed responses and reassurance, I will most certainly take these to my doctors and get a second opinion as well, sharing what I learn in case it is useful for anyone else. The wait until I see the doctors is the hardest now.

should I expect to be on medication for the rest of my life once I get a pacemaker? The bit that worries me, having read a lot of the forum, is the settings and challenges with feeling unwell and trying to work out why it may be the case once you have a pacemaker. 

Hi and welcome 👋🏼

by Lavender - 2023-08-08 12:51:31

I'm not on any medication at all. There's nothing structural wrong with my heart, just complete heart block-faulty wiring!

Your echo was good so you probably only need a pacemaker.  It's not a death sentence! It's a lifesaver!! You're blessed that it was discovered and didn't sneak up on you!  Mine was sneaky and I had to wear a monitor to catch it after fainting 26 times in six months. Yes it could lead to sudden death but the pacemaker prevents that. 
 

I was told that I didn't need further tests. Catching the pause of the heart block on a monitor was proof enough. 
 

Don't worry in advance. Settings are not a big deal. They can work it out. 
 

God is watching over you. He has a plan for your life. May peace shower over you. Take a deep breath and slowly release it.  Help is on the way. 😉

medication

by Tracey_E - 2023-08-08 13:11:49

Having a pacer and having heart block are not reasons for medication. 

Settings, if you are active it's a bit more challenging to get the settings just right, but once it's fixed we are usually good unless our heart changes again. They normally send us home with the settings out of the box, and they turn up the signal a bit until the leads settle and the heart gets used to pacing. At our first check, they will turn it to the lowest setting the heart responds to. 

The people who have the most trouble with settings are the ones with sinus issues. In that case, the pacer has to figure out how fast we need to go. With av block, this isn't usually an issue. Keep in mind that people tend to come here because they have problems. That's a tiny minority of all of the people being paced every day. 

If block gets worse over time, the pacer will automatically keep up with no change in settings needed. 

My two cents

by John_Locke - 2023-08-08 15:30:13

Welcome as a provisional member of the club.

I only joined recently myself. In my case, I had known about my condition for a long time, though it was never considered to be "bad enough" to do something about it until recently. I have an intermittent heart block. Most of the time my wiring works as it should, sometimes my ventricles skip a beat, and sometimes not one but five. There's no clear cause for this or explanation as to when it happens, and no real way of telling what might cause a 5 second pause to turn into a 10 second pause or longer.

I'm also "young" in this context, at 41, and hearing for the first time from a specialist that my heart might in fact just stop took some real getting used to. I'm coming to accept though, one small step at a time, that my body is what it is. I can't change the hand I've been dealt in the genetic lottery, but I can luckily with the help of modern medicine buy myself an insurance against sudden cardiac arrest.

Being young is sometimes described as incurring a higher risk when it comes to having a pacemaker, though I find this misleading. It's not that younger people are more likely to have adverse effects of a pacemaker in any given year - if anything if you're otherwise fit and healthy you're in a much better state to handle any complications if they were to arise - it's just that having a pacemaker for many decades means that are many decades where something potentially could happen. For me, I'm quite happy with this tradeoff, a small risk of something developing over the span of many years with the opportunity to do something to address it, vs the party stopping abruptly at some point without me even having the time to realise what's happening.

All stats that you may come across are also necessarily based on historical data rather than current or future. I've had a pacemaker implanted about a month back and it's expected to last me another 12 years. In 12 years time I expect leadless pacemakers to have evolved much further and it's possible that I won't need these wires in my body ever again.

Great Advice

by Johnxyz - 2023-08-10 18:58:43

Great advice given by the other members.

I got a pacemker to correct Heart Block 3. Mine was an emergency implant because Heart Block 3 almost got me for good. I had a pulse of 30 when I recieved my emergency implant which immediately corrected my condition.

Do not play around with Heart Block it is most likely to get worse and you may get into an unwanted energency situation with limited options.

A pacemaker will most likely completly fix your condition and make you feel great again. 

Many pacemakers are now Bluetooth enabled making setting changes and monitoring very simple.

pacemaker impact on heart health

by pace_23 - 2023-08-12 20:28:13

thank you again for all the responses - I feel much better prepared to have the conversation.

Other than addressing the condition, I was wondering how having a pacemaker has impacted your heart health over the years? 

deleted comment

by pace_23 - 2023-08-15 04:27:19

one of the members posted a very detailed comment about questions re pacing just before Johnxyz. Sad it has been deleted as it had a lot of (I think) good questions for me to ask the medical team.. if anyone knows who it was from, please let me know so I can get back in touch or ask them to repost it. Many thanks

impact

by Tracey_E - 2023-08-23 13:51:47

After 29 years of pacing, my ejection fraction has not changed at all. My heart is stronger now because I can work out and stay in shape, before pacing I did not have the stamina for that. If I was not paced, my heart would likely be in much worse shape, so many years of being out of sync. When we have block, the atria pushes the blood into the ventricles, but the ventricles are not pushing it out in a timely manner. This is hard on the heart. Much harder on the heart than pacing. 

I'm not aware of any moderated deleted comments which usually means the poster deleted it. (Gemita and I are moderators)

You know you're wired when...

“Batteries not included” takes on a new meaning.

Member Quotes

My eight year old son had a pacemaker since he was 6 months old. He does very well, plays soccer, baseball, and rides his bike. I am so glad he is not ashamed of his pacemaker. He will proudly show his "battery" to anyone.