Permanent PM Required

Hi All,

 I have second/third degree AV block and have been advised I need a permanent pacemaker. I’m not symptomatic and finding it hard to come to terms with it all. I’m 33 with 3 small children and I’m scared of not being around to see them grow up. Does anyone have any advice on how to cope with coming to terms with needing a pacemaker and what kind of life changes I will need to make once it’s done? Any advice would be greatly appreciated.

Katrina 


5 Comments

Life changes

by Theknotguy - 2020-07-27 23:08:54

The pacemaker is a help and not a hindrance.  If you look around this forum you'll find people with pacemakers doing everything that "normal" people do.  I went back to my "normal" life after I got my pacemaker.  In fact it was better because I now have a good heartbeat and can do things I couldn't do without my pacemaker.  

There are changes, of course.  It is very hard for me to get a private pilot's license because of FAA regulations.  I have to be careful using reciprocating saws and I have to be careful with bouncing or vibration as it jiggles my pacemaker and makes it think I'm running.  So it automatically kicks up my heart rate.  I can't be around those extremely large electrical magnets they use in scrap yards but, other than what I've listed above, I don't have any limitations.  

It is very hard for the people with pacemakers and ICD's to relate to people without them.  I volunteered at the hospital where I had my pacemaker implanted.  I found out the nurses on the heart floor knew how to get you up and out the door after you got the pacemaker but they had very little knowledge after that.  I used to entertain them with some of the amusing stories of things that happened to me because of my pacemaker and they were always happy to hear.  There was also a lot of mis-information they had about pacemakers too.  So I was usually updating them about how things had changed.  

The angst of getting having a pacemaker implanted is real.  Everyone goes through that.  The unknown is hard for the mind to grasp.  However, as you will see if you look around this forum, after a while, people with pacemakers go a long time without even thinking about them because their life is so "normal".

I don't explain this very well, so I hope some of the others chime in.  I will say, my life is much better with my pacemaker and I'm very glad to have it. 

 

Pacemaker blues

by AgentX86 - 2020-07-27 23:19:30

You shouldn't be upset that you need a pacemaker.  It's not a big deal.  Really.  You're young but not nearly as young as some here when they got their first PM.   There is no reason that you can't live a normal life with a PM and in fact it will make possible what won't be without it.  In a few months you'll almost forget you have it.

fake news

by dwelch - 2020-07-28 03:47:04

First off, Ill be blunt if you have heart block, your first and last question should be how soon can I get a pacemaker.  Esp as a parent.

Now that doesnt mean you need one immediately.  I was pre-teen when diagnosed and first pacer at 19 years old.  Have had pacers for 33 years, on device number five, cant see how I would be here without them.  Depends on when they find it and how bad it is, etc.  Pacers were to some extent not experimental things when I got mine, but today they aint no thing.

As pointed out above the general public, even docs/nurses dont all get it.  Too many TV shows, etc that even mention one are quite clueless and imply that a person with a pacer is disabled in some way. (without the device, yes you may not be able to do things,with the device is another story)  Now each of us have our own medical issues, and not every one of us are 100% normal with a pacer, but heart block, that is easy to fix with pacer, if that is all you have going on, done, end of story, heart fixed go back to normal, and sleep soundly without worries of what might happen.

Relatively easy to live with, you know its there like a belly button and a big toe, sometimes you bump it.  When my daughter was little, they have those sharp elbows and knees and toes, you learn (even without kids) to protect the site from impact.  You get some bumps from time to time just like your big toe, but then you move on and forget you have the thing.

Wont hinder you from being a parent (without a device might) wont prevent you from playing with your kids (may improve that experience with a better working heart). 

My daughter is full grown now and like my wife their skulls are exactly at pacer height so hugs need to be on the other side, sometimes they forget and sometimes I get bumped, it is what it is.  I have taken a couple-three hard hits on the site and no damage to me or the device.  A bump here and there is again like stubbing your big toe, hurts for a bit, then it goes away.  that and the car seat belt are you biggest concerns not because there is any risk to the device, but just because it hurts or is uncomfortable. (not to be sexist, but assuming your gender based on your name and your personal attire habits you might also have bra strap issues, lots of folks on this site with advice about that)(being in Austrailia per your bio, the belt is on the other side, so thats good, im in the US where we drive on the correct side of the road putting the belt over the left side where most of us have a device).

It is trivial to see third degree block on an EKG, only takes a few beats.  second degree that might take a holter being worn or longer.  The pacer simply fixes the connection so that the lower chamber beats at the right time.  it likely will do this 100% of the time.  That doesnt mean that you are 100% dependent, each visit to the doctors office they will do a test where they stop the device and watch you return to pre-pacemaker normal where they upper and lower do their own thing.  While not great, it does mean that if something were to happen to the device (extremely unlikely) you would still be fine, more than long enough to get it dealt with.  No we dont run the batteries down faster, if anything we just get a bigger battery to start with.

As mentioned we all have been through the first implant and recovery, at the time its all you can think about, but in the grand scheme of things you are back to relative normal within days or a few weeks, and then normal within months then you have a long 10+/- years of cruising before you do it again.  by then you generally forget the prior one.  The second one on are usually simpler and quicker as the leads can be reused.  Open the pocket unplug the old one plug in the new one sew up the pocket, go home.  

The mental takes longer, and some folks here didnt have any issues but many folks do.  There are the things like why me, what did I do, am I not normal, etc.  There are fears of toasters and electric toothbrushes, can I use them anymore (absolutely, literally almost everything is fine).  In my case my heart was big and beating so hard that I felt every heart beat, it was just part of my normal life.  The pacer fixed that and I felt empty inside, it took months to get over it, also they bumped my resting rate up with a minimum so instead of 44 or so resting and in the 30s when sleeping it was 50 or 60 whatever and that took a bit of getting used, to but again in the grand scheme of things it was a tiny amount of time.  The mental went away, the normal fears went away.  

So anything you have seen on TV or other places where there were clueless authors or creaters of content, its bogus they dont know what they are talking about, dont judge the experience based on the media.

Tons of people have pacers, docs are pretty much constantly putting them in globally.  Your doc probably does so many a week, multiply that by all the docs doing them.

Folks like us that are born with heart block, are often the youngest patients in the doctors office, for most of our lives, we may be the youngest one that doc has in their practice, I was so happy to find this site and find that I wasnt the only one (my first few days/weeks here someone had started at 8 years old and had a bunch of devices).   Like me and others here you will likely retire a doc or two, my first doc is long retired now, I moved before he retired, but retired nevertheless...My current doc I suspect I will retire not too long from now if I stay here and insurance doesnt make me change.  (well she will retire some day whether or not I am there)

Some practices the EP and the surgeon are the same person, others the EP, surgeon, etc are different people or perhaps even more than one of each in the practice.  At least the office I go to I am perfectly fine with that arrangement, excellent surgeon, excellent EP that I interface with directly.  Some have their own techs/nurses that do the interrogation, sometimes the doc does it, and sometimes someone from the pacer company does it.  Doesnt matter it is all fine, they know what they are doing, a doctor is ultimately in control of any settings being changed, the techs dont just muck with things willy nilly...

What you need to do if not done already.  Find a doc you trust, trust the doc you find.  They pick the device they pick when, etc.   Find out how urgent this is, if you need it now or just some day a few years from now.  Clearly indicate to the doc your current and possible real activities, if you are a backpacker, a contact sport athlete, etc you may want the pacer placed under the pectoral muscle so that you can wear a backpack or pads, etc.  An avid cyclist or other athlete you may wish to have a device that has upper limits more suited to that.  (remembering that the device makes your heart work better than it did before).  Then let the doc pick the device, placement, and go from there.

Before long you will be an old pro at this giving advice and comfort to folks coming in.  Perhaps on the good side here is that you are an adult (how have you made it this far without an EKG?)  my folks made these decisions for me, and they told me they basically trusted the doc. 

If what you have is really CCHB (complete congenital heart block) then you cannot give that to your kids, it has to do with a non-heart condition of the mother during the pregnancy. (again assuming gender based on name your heart condition wont transfer but if you have an autoimmune disease that could cause CCHB in your kids).  But it is worth asking the doc even if you/we think we know the answer, so that you can have your kids EKGs done.  And the anxiety that you are experiencing now may drive you to have them checked anyway, its easy these days, EKGs are not as hard to come by as when I was young.  

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

I tend to ramble on.  Seeing the above answer.  Id say you are pretty old for heart block (not caused by an event like a heart attack).   And per your actual questions:

If you were symptomatic, you would probably have started your question off with, I woke up in the E.R. with a pacemaker.  So you wont have symptoms, but the EKG makes it trivial to see.

How to cope, that is like any other coping, it is mostly on you.  Tracey_E when she sees this Ill put words in her mouth:  Education.   Read up on this condition and pacers and everything, this site alone is excellent, lots of good nuggets, but you have to dig as most of the posts are fears like is this normal when it does this, can I use my lawn mower.  Pacers are not a bad thing, they are a good thing.  The general mental stuff we each have our own ways, what works for me may not work for you at all.  Just like pacers are not a bad thing, seeking out professional counseling is not a bad thing, if this is troubling you that much.  It sounds insurmountable right now, but notice how many times on this site folks say you will forget you have it.  You WILL make it through this relatively short transition in your life and will come out better on the other side, better and safer and forget you have it.  It WILL happen.

Life changes:  every 10 years give or take a few, you will get a new device and be sort of out of commision for so many weeks.  What you realistically can and cant do, during those weeks varies.  Sleep takes some number of days, sleeping on that side may take a couple of weeks.  raising your arm completely couple-few weeks, etc.  Driving, by device number five (even number two) folks like me and others here, driving and back to work if so desired in a couple of days.  I usually give it a few more days after that, start back on a monday depending on when the surgery happened. 

You will naturally become protective of it, just like you protect your eyes and other body parts.

You will be able to play with your kids and pick them up and be there for them for a very long time, just need to train them not to hit you on the pacer.  Cause it really hurts. 

If you are a welder, or work in the power industry and are close to generators or power lines or sub stations, etc, then you might need to change, which is a big life changing thing, yes.  But relatively speaking almost none of us have to change where we work, where we live, what we do.

Coffee makers, hair dryers, lawn mowers, microwave ovens, etc do not affect the device, nor do fridge magnets, you can leave those on the fridge you dont have to ban them.  Not necessarily educated lawyers for countless commercial products provide legal warnings for pacemaker pateints with respect to their products.   Read the dozens/hundreds of posts on this site on these topics.  Ink is cheap, pixels are cheap, from their perspective it is very close to free to print a warning in the products manual.

Your fitbit or apple watch or other may no longer be able to correctly read your pace...oh well...get one of those led finger cuff ones if it really matters to you.

Sorry this is so long, within the club if/when you join us by getting a device, us heart block patients are a sub-group since we often start younger and are paced most of our lives.  If you have to have a pacemaker worthy heart problem, heart block is one of the ones you want.

changes going forward

by Tracey_E - 2020-07-28 09:49:19

The biggest change being paced is the comfort of knowing that you have that safety net, that you will feel good and be there for your children. When we are younger we can get away with a low heart rate and beating out of sync, but it it's hard on the heart and takes a toll on the body so it's best to get it fixed. Organs need oxygen to thrive. There is absolutely nothing I want to do that I cannot, having the pacer is not at all limiting.

I got my first pacer for 3rd degree av block in 1996 at age 27 and have paced every beat since. I was told not to have kids without the pacer so I've had it all their lives, my girls are 22 and 23 now.  My youngest is the adventurous one, I hike and ski and go ziplining with her. The oldest is a runner and we do races together. 

When I got my first pacer, I found that I felt a whole lot worse than I thought I did. I told myself I was fine but the symptoms were sneaky and came on gradually enough that I had no idea how bad I really felt until I had a new normal to compare it to. Others in your shoes have found the same thing, having the pacer and a normal heart rate means more energy. A LOT more energy. 

Feel free to message me any time you want to chat. I've been in your shoes. I was petrified when I got my first pacer. I didn't know anyone else like me and this was before the days of google so I could go find someone who'd been there. The surgery was easier than expected and after I felt better than I ever dreamed was possible. In 26 years paced, I've never had a serious complication and most of the time I forget it's there. I live a full and active life, grateful to have been born in an age when there is a fix for my condition. I know it seems hard to believe right now, but it only gets better from here and the day will come when you barely give this a thought. 

Coping

by Hot Heart - 2020-07-29 11:59:49

You will need help with the children for the first 6 weeks until your wires have successfully bedded in.  After that, to be honest, I dont do anything any different to what I would have done before, other than I dont go on zip wires.

 

You will be much safer with the device than without it, it's like an insurance policy in case your heart decides to slow down too much.

I was terrified when I got mine, I never think about it now, I'm only in here because I've had my 12 year old device replaced this morning.  Was home making lunch 3 hours later.  I'm 67 going on 25 lol, love the gym, swimming, socialising, shopping, dancing, going abroad; I'm just grateful that this little devide has enabled me to do all this.  I asked to see my old St Judes one this morning so I could say goodbye to a really good loyal friend before they disposed of it.

 

You know you're wired when...

You invested in the Energizer battery company.

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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.