Should I install a PM?

It is a yes from me

by Gemita - 2020-10-21 08:10:55

Hello Koala,

You are not being stupid for being concerned and asking questions about whether a pacemaker is appropriate for you.  It is sensible to go through these questions and consider all your options before coming to a decision.  But with several opinions from different cardiologists who are all saying the same thing, I think you have your answer.  You may well have been okay till now, but this could change at any time and you would be safer to go down the pacemaker route.

As you get older your condition which sounds like a complete block to me already, will only get worse and your heart rates will probably get lower and lower until you might pass peacefully in your sleep.  I would try to avoid this if you can.

I had the same fears, although I do not have the same condition as you.  I did though have an extremely low heart rate, falling at night to below 30 bpm.  I can honestly say that a pacemaker has made such a difference to my life and the procedure itself was actually not as invasive as I expected.  I also healed quickly from the procedure and noticed a difference straight away with a higher heart rate.

So it is a yes from me.  And the pacemaker rarely fails.  Yes things can go wrong.  What is 100% today, but it is far less likely to fail than your heart at the moment, so I know which option I would go for.  I would imagine a higher heart rate will help ease the burden of a slow circulation and all the potential problems this can cause.  And also your assumption that an enlarged heart will help keep blood flowing is an incorrect one since an enlarged heart can make it harder for your heart to pump blood efficiently throughout your body.  

I hope your doctors are able to control your excessive iron levels to try to prevent further build up in the heart since I see it can cause cardiomyopathy.   Good luck

listen to the doctor

by Tracey_E - 2020-10-21 10:18:29

Not passing out is not much of a benchmark for thinking you need the pacer. You don't know where you will be the first time you pass out. We've had members pass out while driving then recover from a car accident as well as getting a pacer.

Enlarged heart is not a good sign. It means the heart is working too hard. I, too, had an enlarged heart before I was paced. I have congenital 3rd degree block, diagnosed at age 5, paced at 27. I'm 54 now. 

Have you been tested for hemochromatosis? That causes high ferritin levels. I have it, so does my mom. My doctor tested me when my mom was diagnosed, this year was the first my levels got high enough to do something about it. I was able to go to a blood bank and donate with a prescription. I qualify as a donor so they were able to use my blood, but they will do the draw whether they can use it or not. It's genetic, unrelated to heart block. It's easy to manage, just get regular blood work and donate blood when it gets high. When the levels get high, we can get painful joints and it's hard on the liver. 

Bottom line, your doctor is 100% correct- you are taking a huge risk not getting it. You can pass out. Your heart can stop and not start up again. It's putting stress on your organs, which need oxygen to thrive. 30 during sleep is dangerous. 70 during exercise is completely inadequate. What's more normal is 70 during sleep!

Your rate can suddenly drop lower. That's what happened to me. It was 44 all my life, didn't go up or down, then one day it dropped to the 20's and I had emergency surgery to get the pacer. I almost died that day and emergency surgery is not the easy way to do it. At the time it never occurred to me that I was in any danger, having a heart rate that low (22 when I was admitted) is like being drunk. I thought my purple fingernails were hilarious. I also learned that I didn't feel nearly as good as I'd convinced myself I felt. When we are younger, the body compensates. As we age, it takes more of a toll on the body. The symptoms come on gradually enough that we forget what good feels like. I could feel the difference the minute I woke up in recovery, was like mainlining caffeine. I've never once regretted it. That was 1994. I've never had a serious complication. I am healthy and active. 

Yes, there are some risks to having it, but they are far outweighed by the risks of not having it. The odds of your heart failing are many times higher than the risk of the pacer failing. Be careful reading too much here, it will start to sound like every other person has major complications. The reality is ALL complications, big or small, are less than 4%, serious complications are well under 1%.  Most of that 99.9% doesn't come posting here. 

I understand no one wants a pacer. I sure didn't, but now I'm nothing but grateful to have it. People have metal in them for all sorts of reasons. My sister has plates in her arm from a broken wrist, my husband has screws in his ankle, my dad has titanium rods in his back. I have a pacer. It's harder to wrap our heads around when it's our heart, but I promise you it's not that big of a deal. Most of us quickly get to the point where we don't give it a thought. It's just a part of me. I found that the surgery was nothing compared to how I'd built it up in my head, and living with it has been better than I ever imagined. I thought I had energy before, but I had no idea! We can get by without it, but we need it to thrive. 

If you have any questions about the surgery, recovery, living with CCHB long term, feel free to message me. 

Questions

by koala - 2020-10-21 11:10:39

Reading how people had to put another PM or had to extract the old one, adding more wires etc. really turned me off having a PM. 

Do you need to take a regular medication for having a PM? 

How's flying / travelling with one?

How often do you have to change the battery?

How bad was the battery change process?

Is there any food you need to avoid?

For some reason, I don't think I'm in any danger and that the doctors are just reacting based on the "textbook" recommendation. Is it really not possible that someone's body with a 3rd degree block can adapt and live safely without a PM? Anyone's heart, blocked or not, can theoretically, suddenly stop, no? What makes a 3rd degree blocked heart in more danger of stopping than a normal heart? I was told that there is a backup "natural pacemaker" that's pacing independently at the lower rate, and that's what's happening with me.

I'm trying to understand this to help me make a decision.

I don't feel particularly lethargic but I must admit that the promise of extra energy sounds appealing.

I'm afraid you are deluding yourself

by crustyg - 2020-10-21 11:34:02

Hi: The evidence for an increased risk of sudden cardiac death with untreated complete heart block is good.  The risk isn't massive, but it's there.  There's nothing anyone can do to predict it.

Increased ferritin: someone really needs to check if you have haemochromatosis (often manifests as heart electrical conduction issues, hence why *every* EP-doc checks a ferritin on new patients with conduction issues).  If you *have* this then a slow heart is the least of your worries.  Get this sorted before any damage becomes irreversible.

Having a PM: if you're lucky you might get 15years between battery changes (EL-versions), but more usually it's 7-8years.  Battery change: local anaesthetic, 30min and you're done.  Sometimes easy, sometimes a little more digging through the scar tissue.  There's an emotional adjustment, but we can help with that - and your own reading.  Many folk (who are happy with their PM) never bother with this site, so you're seeing a very biased group of folk with complex disease processes or complex needs.

Flying - no problem, just walk through the metal detector gates, there won't be an alarm.  Hand wands should find a PM (so you carry a little card), MRI is ok (once they've considered it), no drugs needed, and having a low resting HR does *not* increase your HB levels.  They might review your blood work to make sure you don't have PRV (the old name).  From a statistical perspective, your body is more likely to have a malfunction than any PM inserted into you.  Foods: nothing to avoid, but the evidence seems to be that daily alcohol isn't good for the heart, sadly.

Having a slow resting HR isn't, of itself, a problem, but you are hanging on to life by a little group of cells near the top of the ventricles that want to fire off on their own when normally they are driven by the top of the heart (SA-node => AV-node).  One day they may stop.  My little group were giving me a resting HR of 42BPM 16months ago and were down to 28BPM five months ago.  You really want to predict that those cells will keep you alive for another 35-40years?

At your age, you ought to be able to manage a maxHR nearer 160BPM - regardless of heart size.  I'm an athlete with cardiomegaly and regularly hit 165BPM for 15-20min sustained.  You will be amazed by the improvement having a sensible HR will give you.

Please, stop wasting time: this isn't a choice, it's a *MUST* for you.

answers

by Tracey_E - 2020-10-21 11:43:19

Reading how people had to put another PM or had to extract the old one, adding more wires etc. really turned me off having a PM. 

I've been paced 26 years. Leads last an average of 15 years. I had one replaced in 2010, my other original lead is still going strong. I had room for the extra lead so they added it to what's there. I have not yet faced extraction. Only a very small percentage of paced patients ever face extraction. Extraction technology gets better all the time, the number of experienced surgeons is on the rise. It's no longer considered a risky surgery.

Do you need to take a regular medication for having a PM?  No. Heart block is an electrical problem completely fixed with the pacer. People who are on drugs are on them for other conditions, not having a pacer or block

How's flying / travelling with one? Same as flying without one. Once upon a time we weren't supposed to go through the metal detectors but we don't set them off and they don't affect the pacer. The 3D scanners use xray technology so no impact whatsoever. I have walked on through without even mentioning it at airports, trains, cruise ships, concerts, court houses. 

How often do you have to change the battery? Mine have lasted an average of 7 years, however my current one is 6 years old and still has 9-10 years left. Replacements are super easy, I'm home by noon. Getting a new one can be a good thing because we get the latest technology. 

How bad was the battery change process? The soreness the first time is from making the pocket. The restrictions the first time are from new leads. With a replacement, they go in through scar tissue and use the old leads so it's just a matter of the incision healing. I left for vacation less than a week after two of my replacements. 

Is there any food you need to avoid? No, but it's a good idea to eat a heart healthy diet. We have electrical problems. I always thought it would be pretty stupid to put myself in a position where I'm compounding it with plumbing problems that could have been prevented by taking better care of myself. 

What makes a 3rd degree blocked heart in more danger of stopping than a normal heart? I was told that there is a backup "natural pacemaker" that's pacing independently at the lower rate, and that's what's happening with me.  Yes, the back up system is what is keeping you going now. That is not stable, and it gets more unstable as we age. See my comments above about the day I got my pacer. 

There are very very few things we cannot do. ARC welding, touring a power plant (I've done that one, felt fine). We shouldn't use the electronic scales that calculate bmi, anything else around the house is fine. I do Crossfit, hike or ski most vacations, kayak every chance I get, love ziplining and ropes courses, ride roller coasters. In Feb right before the world shut down, I did a mud run on Saturday followed by a half marathon on Sunday. I see my ep once a year for xray, echo, ekg. I have a monitor wrapped in a towel under my bed where I don't have to look at it. Every 3 months it automatically does its thing, I get an email from my ep saying all is well. There is nothing I want to do that I cannot, and I truly don't think about it most of the time.

Please get a PM

by Camelgirl - 2020-10-22 09:08:29

Hi , I am new to this group and am learning so much and adjusting to my own situation but as all the other comments say please get that PM. It is approx a year now and I suffered a bradycardiac arrest, I had recently been diagnosed with bradycardia however it deteriorated very quickly , within months. Luckily for me I was in hospital when I arrested and I can now continue living my life thanks to my PM  but this could have been a very different situation . Don't take any risks , I am proof worse case scenarios do happen and are real.

take care

Should I get a pacemaker?

by jfbuffy - 2020-10-22 09:50:38

Hello,

I got a pacemaker in March of this year! This site was invaluable. You have some really smart people in the pacemaker club and they helped me tremendously. Some of them are doctors. We have a risk assessment here and I agree getting the pacemaker is probably the best decision. But it has to be YOUR decision. Truth be known it may not be as big of a deal as you might think, You know what they say error on the side of caution. Doctors can give advice but you have to make the decision but you sure came to the right site to ask all the right questions, Best of luck! 

Pride comes before a fall

by LondonAndy - 2020-10-24 19:13:57

I may be lucky in that I like gadgets, and so having a pacemaker inserted in me did not trouble me emotionally.  Besides, I had no choice - the reason for mine being inserted was "surgical complications" - they accidentallty damaged the electrics of my heart when they replaced my aortic valve, and I am 100% dependent on my pacemaker.  One plus about this is that there was no time to even think about this beforehand - it was a sudden thing.

But it seems to me that for you (and others shocked that they need a device) there is a degree of pride at stake - perhaps feeling as if in some way you are failing if you need one.  Do people think that about weaing glasses?  It is not (usually) someone's fault if they need them.  So it is not your fault that you need a pacemaker, and you already know the likely consequences of not getting one.  Time to bite the bullet and get it done.  You'll wonder why you worried about it soon after.  Come over to the other side ;) 

You are well past the ready point

by dwelch - 2020-10-27 06:50:55

You should have one already, you are beyond the safe point.  It is time.  Your question almost sounded like my bio if I were to write one except mine was found as a teen (is congenital) and the doc mostly chose to wait a while until 19 when I got my first one (always monitoring my heart muscle thickness and heart size).  I was a teen and lied to the doc about my activities, it was incredibly dangerous.  This is not a case of waiting to pass out it is a case of simply dying.  

Of all the heart conditions you can have complete heart block is the best or one of, it is trivial to fix with a pacemaker.  Your heart wont be so overstressed, your risk of death will simply go away.  Life with a pacemaker is simple and easy.

There are a few of us here with congenital complete heart block as in from birth.  Tracey_E being most notable, but there are a few others, decades with pacemakers.  It is trivial to detect on a ekg, only takes one or a few heart beats doesnt even need a stress test.  And trivial to fix, to make you safe.

If it were anyting but heart block, sure it is worth questioning, but heart block the day they find it is the day you make the appointment for the implant, you dont wait for the heart to enlarge and become high risk....you simply dont wait, if it is complete heart block you just do it, period.  There are no valid reasons not to.

Maybe you need a new doctor that can explain just how simple this is for something so risky.

My resting heart rates were that low too, as others that have the condition.  It is not a case that our bodies have adapted and made a new normal it is instead dumb luck that the body happens to have a mechanism to survive (natural selection basically, although in this case not in a good way), we shouldnt be here, the heart should have simply stopped.  Your heart is working overtime to keep you alive, it is not a rate thing (it is not working properly) but a muscle thing, the heart/body cant fix the rate so it has to work extra hard on pumping since it is out of sync.  The thickening of the heart walls the enlargment of the heart is your last warning.  It is now or never, no simple way to put it.  It is such a trivial fix to extend your life from a few months/years to decades more.  It is like not spending $20 to fix a hole in the roof, but instead let the water in and mold take over your house and lose the whole thing.  Just do it, why throw your life away over something so trivial?  It is like not wearing glasses and simply waiting for that fatal car wreck to cure your vision problem forever.

You can still enjoy your activities.  I did a half century bike race pre-pacemaker, the doc had a field day with that one, and after that I never told him my activities again, I just did them. stupid teenager.  Before pacemakers the life expectancy of a person with complete congenital heart block was only into their teens, I was lucky.  Now it is so trivial to fix that there isnt a statistic.   Developing it later in life is not any different, the timer has started, you have been given warning signs it is your choice to observe them or not. 

I really hope you join the club.  I started this journey before the public internet, basically decades before I found others I could talk to.  There is a wealth of information here in our shared experiences, folks like Tracey_E, myself and some others that have had a handful or more devices now.  Folks with other conditions, but still share the same stories about implants and interrogations, good doctors and bad.

concerns

by koala - 2020-10-27 12:48:32

Thanks for all your thoughts and advice. I suspect my CHB is congenital. As far back as 25 years ago I remember that my heart rate was super low - in the 32-38 range while awake but resting. I suspect it has always been this low all my life.

About high ferritin - I have been tested for Hemochromatosis - I don't have it. I'm not sure why my iron is high though. I don't know how long it has been high for.

After reading all your thoughts, I have been swayed towards having a PM. However, I am a bit concerned about the impacts of the operation:

- I am worried that it may cause more damage than good (i.e. bad luck during the operation, something could go wrong, e.g. the lead insertion punctured my heart wall / valve etc)

- The Dr mentioned that for the first 3 months, I shouldn't lift my left arm parallel to or higher than my shoulder. This would put a hamper on a lot of my daily routines: heavy lifting, playing an instrument (clarinet), laundry, carrying a sleeping kid to bed, even unloading the dishwasher.

- I'd imagine at least I could go for a walk around the neighbourhood fairly soon after?

- How soon can I get back to driving a car?

- I would anticipate that the wound will be sore for a while

I am however, looking forward to possibly "feeling better" (which I don't realise that I am not right now) - as many of you have said, but still very nervous about the unknown.

more answers

by Tracey_E - 2020-10-27 16:16:18

About high ferritin - I have been tested for Hemochromatosis - I don't have it. I'm not sure why my iron is high though. I don't know how long it has been high for.

We check my levels ever 6 months. There are two different genetic tests for hemochromotosis. One of mine came back negative, one came back inconclusive. My doctor said I didn't have it, but then with my mom's diagnosis and my climbing ferratin levels, he said oh yes I do have it. So, maybe ask for the other test? I believe there are 4 genetic markers. I only had one of them. 

- I am worried that it may cause more damage than good (i.e. bad luck during the operation, something could go wrong, e.g. the lead insertion punctured my heart wall / valve etc)

The odds of any of that are less than 1/10th of 1%. The odds of you passing out in the next couple of years? Probably closer to 100%. 

- The Dr mentioned that for the first 3 months, I shouldn't lift my left arm parallel to or higher than my shoulder. This would put a hamper on a lot of my daily routines: heavy lifting, playing an instrument (clarinet), laundry, carrying a sleeping kid to bed, even unloading the dishwasher.

Most doctors have those restrictions for 4-6 weeks, not 3 months. You can unload the dishwasher, just pile stuff on the counter that goes over head and let someone else put it away. Or I left it on the counter short term, made it easier to get to until I could reach again. You can do what you want with the right arm. Unless you play it overhead, there's no reason why you can't play clarinet or fold laundry. Carry the kid on your right hip, use the left arm for balance. I had a replacement when my kids were 2 and 3, I got really good at working around restrictions. I played with them and changed diapers on the floor. Heavy lifting will have to wait.

The main thing most of us find a challenge is washing our hair! But we get pretty good at doing it with the right hand and keeping the left down. You can and should use the left arm, just don't raise the elbow above the shoulder. Just takes practice. First time or two I asked my stylist to wash it for me. 

- I'd imagine at least I could go for a walk around the neighbourhood fairly soon after?

I was walking around my neighborhood the day I was discharged. 

- How soon can I get back to driving a car?

Depends where you live, your doctor, and if you've passed out. I drove the next day but I've seen 7 days, as long as 1 month. UK has different rules than US. 

- I would anticipate that the wound will be sore for a while

Everyone is different in their pain tolerance, doctors vary in how they place it so it's hard to say. Ice from the beginning, it will help a lot with pain. I took something at night a few times but during the day got by just fine on otc. By the end of the first week, I was back to my usual schedule, just moving a little more slowly and napping more days than not. 

Can I be blunt? It sounds like you are making excuses and trying to convince yourself it's a bad thing. It's good to do your research and know what you're getting into, but stop overthinking and concentrating on the things that can go wrong. Odds of something going wrong are miniscule. Odds of something going wrong if you don't do this are high. Very high. Concentrate on being safe, on being there for your kids, on how much more energy you will have after. This is a very simple surgery that is done thousands of times a day with amazing results and very few complications. It's time to stop looking at this as a horrible thing that is more dangerous than leaving well enough alone and continuing as you are. It's not horrible, it's not dangerous. Not getting the pacer is playing with fire. What your heart is doing right now is not sustainable. If you have more questions, ask away! I, like a lot of others here, have been around this block more than a few times and are happy to continue to answer your questions.

What Tracey_E said

by LondonAndy - 2020-10-27 16:33:47

Amen

Thanks

by koala - 2020-10-27 17:16:43

Thank you Tracy_E for your patience and detailed answers.

Please bear with me for a bit. There is obviously a resistance in my mind all these years that I need to overcome.

What I still find "weird" is how everyone is saying that the chances of me passing out is very high. I have had CHB possibly since I was born, 43 years ago, and I have never passed out in my life. I think can do any physical activities that I want to do, e.g. run a sprint, hike, play sports, chase my kids, etc. This isn't something that had only just suddenly developed. That's why it's hard for me to see that an operation and permanent insertion of a device is a good thing when I have never even passed out.

I just don't want to do something that isn't necessary. I understand how it must seem to all of you who are convinced that I must have it.

In any case, I will heed the advice and do get a PM despite my doubt. It does sound like it's a very low risk procedure and "minimal", albeit a lifetime of, inconvenience compared to the alternative possibility of early death which would also be permanent and highly inconvenient of course. There seem to be no prospect in the foreseeable future of a new method of fixing the CHB without a PM.

About the hemochromatosis - my ferritin level stays at around 300+ to 400. It hasn't increased any higher than that, and doctors said I shouldn't worry about it. I will bring up the issue of taking a different test with my GP.

being congenital

by Tracey_E - 2020-10-27 18:06:53

I'm congenital also. In hindsight, knowing what I know now, I would have benefited from it in my teens but my doctors wanted to wait because I was so young. We waited until it was critical and I ended up in emergency surgery.

Here's how heart block was explained to me...

The atria is the brains of this operation, it reads the oxygen level in our blood and raises/lowers our rate as needed. The ventricles are the brawn, they make the strong beat we feel as our pulse. With av block, this signal never gets through so our ventricles are ignoring what the atria does and beat at random.

That means that with every beat, the atria fills but the ventricles aren't pushing the blood through so blood is building up in the atria with every single beat, every single day. This causes an enlarged heart, think stretched out balloon. 

When we exercise or go up the stairs or whatever, the atria says hey!! Need more oxygen!! Let's go faster!!! Ventricles say, huh??? And continue to do their thing, beating at random. Our organs need the higher level of oxgyen that they'd get with the higher rate, but they aren't getting it. The damage this does is like dripping water, the organs are unnecessarily stressed but you can't always quantify the damage. But there is a 100% chance it's doing damage. When we are teenagers the body is fine with it. As we get into our 20's and 30's, it gets harder and harder on our organs. 

It's a gradual thing. It's not like one day we don't need the pacer and the next day we do. Every year we go without being paced, the atria gets more stretched and enlarged. The organs get more stressed.

Some people pass out. I never did, not even when my rate got to 22.  My nails turned purple and I was loopy as hell, like being drunk. My heart could have easily taken such a long break between beats that it didn't start up again on its own. But I drove myself to the hospital. My guardian angel was working overtime that day and in hindsight driving was the absolute dumbest thing I could have done, but I had no idea how much danger I was in until later. My brain was not firing on all cylinders. There is not a doubt in my mind that had I not gotten the pacer when I did that I would not have lived to my next birthday. Note: my rate had been 44 all my life, until it wasn't. I was 27 at the time.

 The back up system that we are relying on to keep the ventricles beating gets more unstable as we age so we are more susceptible to pauses, to our rate tanking suddenly like mine did. That's why I've said passing out is not a benchmark to use to decide if you need paced or not. Unless you have a crystal ball to know when you will pass out to make sure you aren't driving or walking down the stairs or carrying a child, it's playing Russian roulette. Passing out is dangerous, passing out means we waited too long.

You are absolutely correct, there is not fix for CHB other than a pacer. They are working on leadless pacers, self charging batteries, cures with technology like stem cells. None of those technologies are there yet for us but some day they will be. There are some leadless pacers being implanted, but they won't work for CHB. Technology has come leaps and bounds since I was first diagnosed in 1970, who knows where it will be by the time you've worn out your first leads. 

In my case, I'd been told I was ok without the pacer but it was in my future and I absolutely was not to get pregnant without a pacer. I was newly married and ready for kids so I was ready to begin considering it when my rate tanked. I'd actually called my doctor that day to schedule some tests when I mentioned the purple fingernails. Next thing I knew, they had me admitted and headed to surgery and that was that. 

If you'd like to take this to email or have a phone call, please feel free to private message me. I've been in your shoes and completely understand where you are coming from. Please don't feel like I'm pressuring you or don't see your reservations as valid.  I've just been in your shoes and in hindsight realize I was kidding myself, realize that I struggled for several years that I didn't have to had I had a doctor who suggested pacing early, realize that by waiting I put myself in danger. Emergency surgery is not fun. It's better to plan it and do it on your own schedule.  

alternative?

by koala - 2020-10-27 20:31:46

Thanks so much for your detailed answers!

Coming back for more :)

Are there other alternative means of "fixing" a CHB, e.g accupuncture or some other means? I'm guessing the answer is no.

Another question, does a PM emit some sort of noise?

more :)

by Tracey_E - 2020-10-27 21:53:53

Nothing is going to fix it. We were born without an electrical connection between the SA and AV nodes. No drug/chiropractor/accupuncture/surgery can fix something that isn't there. The pacer fixes the short circuit. 

Some pacers make a beep when the battery gets low. Mine have never made any sort of noise, ever. 

Something most people don't realize... the signal that the pacer sends out is an itty bitty electrical signal that mimics the signal the SA node should be sending the AV node. It's not some big shock. The pacer doesn't make the heart beat, it just sends the signal that our heart should have been sending and the heart responds by beating. You aren't going to hear it or feel it. 

The pacer is going to watch the atria. Every time the atria beats, it's going to give the ventricles a fraction of a second to beat. If they don't (and for us they very rarely do on their own, most of us pace 100% so don't be surprised when it does) it sends a little signal, the ventricles respond to the signal by contracting and we have a nice ventricular beat in sync with the atria. As heart problems go, this is the absolute easiest to fix with a pacer. Our sinus nodes are doing all the thinking, the pacer is just playing follow the leader. 

I've been told that dolphins can hear the pacer and will respond to it but I've been swimming with them twice and nothing happened. Dammit.