Gettting pacemaker

Until you aren't.

by AgentX86 - 2019-10-19 12:36:39

There is an exceedingly small chance that a pacemaker will shorten your life and a very good chance that it will prolong it, assuming that you need one, of course. It will need to be replaced every eight to ten years but that's a simple procedure. Leads are more complicated but rarely need to be replaced. Usually new ones can be inserted, if need be, while leaving the old ones in place. That's also a fairly simple procedure.

The short answer is that if you need a pacemaker, it will probably make your life better and often prolongs it. The downside is minimal.

Getting a pacemaker

by Theknotguy - 2019-10-19 12:46:12

At 22 years old, this is a big deal to you.  For those of us who are older and have had more life experiences, it isn't that bad.  

The implant procedure isn't that big of a deal as procedures go.  You're in the hospital in the morning, have your implant before noon, are wakened up and gotten to move, then have lunch.  First implants are usually held overnight in my area (Midwest United States), are given instructions and are sent home the next day.  

Most of the people who have the pacemaker get along fine.  Have no problems with leads, batteries, etc.  What you see on the forum are the people who do have problems and that leads you to believe that everyone has problems when they don't.  I've had one problem in six years and that's because I am doing extreme exercise that most people don't do.  Otherwise, no problems with my pacemaker.  

Battery life depends upon what your pacemaker has to do.  I'm getting about ten years from mine but then, I have two additional programs running and I pace about 90% of the time.  I'm going to run down my battery faster than someone who uses theirs only 20% of the time.  Current typical time for batteries now runs between 10 to 15 years with battery life getting better all the time.  TraceyE, another member on this forum is on her fifth or sixth pacemaker and does CrossFit training.  

How long can you live with a pacemaker?  Just as long as anyone else.  Perhaps longer because you've taken care of your heart.  There really isn't any limit to life just because you have a pacemaker.  How many pacemaker replacements will you need?  Depends upon your heart problem and how much your pacemaker has to do.  

Oh, and as far as living day-to-day....  There aren't really that many restrictions to living with a pacemaker.  If you look around the forum you'll see people going about what are considered "normal" lives.  There are extreme situations which can cause problems.  I've been talking with a person with a pacemaker who did extreme weight lifting - over 300 pounds at his peak - and he damaged his leads.  But, he was also warned about doing that and chose to do it anyway. Have also talked with a person who did sky diving.  Actually the risk from getting hurt is greater on the sky diving side versus the pacemaker side.  But those people are at the extreme.  I do a lot of walking - three to six miles on my hiking days, then move 2000 pounds of wood on another day - so my problem was the settings on my pacemaker didn't keep up with my life style.  A talk with my doctor, a quick adjustment, and I'm good to go.  But then again, most people don't do what I do.  So it wasn't my pacemaker couldn't handle the situation, it just hadn't been set correctly.  Post adjustment I get along fine.  And, as I said, TraceyE does CrossFit training which is far beyond what I do and she gets along fine too.  

I hope you can get your pacemaker in the near future and your adjustment goes well.
 

It needs to be something that *you* want

by crustyg - 2019-10-19 17:48:27

Other folk here with congenital heart block may gainsay me: unless you *need* a PM, don't be stampeded into one.  If you've got this far without any obvious problems then there should be no rush.  AFAIK you'll *probably* end up wanting one as you may find that your unassisted max heart rate is too low for what you want to do in your life.  There are some decisions in medicine where the patient (you) *must* be in full agreement, otherwise the resentment of having something done *to* you becomes very destructive.

Turns out that battery life is not the main consideration: Extended Life (EL) models can go 14-15years (but they are bigger and more noticeable): I've seen one contributor here state that they are on PM box #6 or #7 - a full lifetime.  Lead life seems to be an issue - I've seen one contributor here state that failure of a lead after 15 years is quite common, and they are a lot more trouble to replace than PM boxes (to replace the battery) and the skills to do it safely are a lot more scarce than replacing the PM box.

Talk to your EP doc about His-bundle pacing.  This may be a very important decision for you if you decide to have a PM.  If your EP can't offer His-bundle lead placement, find someone who can.  Pacing the heart through the right ventricle only for a number of years can have adverse effects for some people.

But if your low HR and limited ability to raise your HR has become an issue - after all, you probably went to the cardiologist of your own free will - then almost everyone here will tell you that after a few months of mental readjustment, their PM has improved their life considerably.  Have a look at some of the polls on this site.  Lots of very fit, very athletic folk here - and older folk who love to dance, which needs a decent heart output.

Pacemaker surprise

by LondonAndy - 2019-10-19 18:13:00

I was 48 years old when I got my pacemaker.  It was a result of surgical complication - they accidentally damaged the electrics of my heart when replacing a valve. So although my heart had a problem (blocked valve) it was nothing to do with the electrics.

I am pretty certain the pacemaker has had no negative effect on me, though I am not highly active - just a desk job kinda guy.  I have to go for a check once a year, and as I am 100% paced my battery life looks like 7 to 9 years in total on this, my first device.  The operation was painless and short, and I applied "Bio Oil" most days (once the scar had healed, about 6 weeks) for a good few months and now the scar is almost invisible.  

I look on it the same as needing glasses - it isn't something I have done or have failed at, it is just a body function that needs help to work right.

Your profile doesn't say if you are male or female, or where in the world you live.  There may be some other issues to consider because of this, but in the developed world pacemaker surgery is routine (over 300,000 a year just in the US) and nothing to be scared of, but it is an emotional issue for many and there are some wonderful contributors here who can help more if you are willing to say a bit more about you.  Best of luck!

Pacemaker at 17

by barnet38 - 2019-10-19 23:00:18

I have congenital complete heart block and received my first pacemaker when I was 17 years old.  That was 21 years ago.  I am on pacemaker #3 and am still using the original leads.  The pacemaker has greatly enhanced my life and lets me do all the things I want to do.  I have a demanding job, am married, put myself through graduate school at a major university while working full time, run or take spinning classes a few times a week, lift weights, travel, play the trumpet, hike strenuous trails all over the country, etc.  Others are shocked to find out that I have a pacemaker.  I wouldn't be able to do any of those things without the pacemaker.

My first pacemaker lasted about 6.5 years, the second lasted 9 years, and the one I have now could last anywhere from 12-14 years.  My original leads have worked really well.  I did have a small issue with a lead about 14 months ago, but the PM techs were able to tweak the functions, which solved the problem without surgery.  I will get new leads with my next pacemaker, and there's a possibility that I might have my original leads extracted because I'm young and have no other diseases or underlying conditions.  Extraction is my choice, though, and I don't have to give consent if I don't feel comfortable with the procedure.

Your doctors will monitor you and adjust the settings on your PM to make it work for your activity level.  I see normally see my cardiologist once a year and my electrophysiologist once a year.  I normally send in remote transmissions for my PM once every three months.  With the lead in unipolar mode, the doctors have increased the frequency of the remote transmissions.  It's no big deal because the remote transmissions are sent from home.

CCHB

by dwelch - 2019-10-19 23:59:42

I have complete congenital heart block.  First pacer at 19, same deal didnt have symptoms low resting heart rate, etc.  But at the same time lucky I lived that long without a pacer.  Pacers have made heart block from birth non-fatal.   

Once I got the pacer then I realized I had had symptoms all along, my heart was so smooth it felt empty inside, I was used to feeling my heart working hard to overcome the block on every beat.

I am over 30 years into this journey and am on device number 5.  Dont read much into that average the fifth one is only a couple years old and the one before we removed early to switch to a bi-ventrical, something that may or may not happen for you but its no big deal, just another lead, just another pacer.

You will be the youngest patient in the waiting room and possibly the doctors youngest patient...most of your life.   You will retire a doc or two if you stick with one.  Find a good one, one you trust, and trust the one you found.  If you like them you will be with them for a long time.

Heart block is trivial for pacers.  The pacer replaces the block and makes the upper and lower chambers operate in sync so that the hart doesnt have to work so hard, doesnt have to grow to be oversized and doesnt end up with dangerously thick muscle walls.

Other than the immediate smooth heart rythm, you wont notice much change at all.  Life with a pacer is easy, like a belly button or a toe you forget you have it until you bump it on something, or have a doctors appt.  

Dont be confused by the notion that the higher your usage rate the higher the battery burn rate.  With complete heart block the lower chamber should be at/near 100%, but the device chosen by the doctor for heart block has a larger battery.  Because you will have a lifetime of pacers the doctor may try for brands/models that will give you a couple/few more years per device.  But the reality is the lifetime is not predictable.  The doctor may switch brands from time to time this is not a bad thing, my EP uses devices from the major players, if there ends up with a problem with a brand/device not all of her patients will need an early replacement.   You are 22 I have leads older than you.  Of my first two leads one broke on the first replacement.  So lead number three, using two.  For device number five needed a third active lead, so four leads three being used.  I have medtronic, guidance, and boston scientific leads.  I have had medtronic, st jude and boston scientific pacers.   

Because I have moved a few times and becuse of how insurance works, I have had a number of cardiologists.  I have "fired" one, dont be afraid to do this, if you dont like the doc, if they dont listen dont care dont answer questions, dont sound confident, etc.  Find another.  

Heart block should be easy to see on an EKG.  Ask your doctor to show you this, if this is what you have and they can show you, get a pacer... period.  This is a good test of how you like this doc, are they able to show you this, and show you what a normal rythm looks like.  If not find another doc, but dont procrastinate if you have heart block then start the journey toward a pacer.  You might not need the pacer right now, this year, next year.  But eventually, it was quite a few years from when my heart block was detected and when I got my first pacer.  I was a pre-teen and teen and didnt tell the doc about the activities I was doing, so was pretty lucky that I made it.  In hind sight I was definitely pushing my luck.

Now yes we are a subset of the folks here, but you are or will not be alone.  I am not the only one here with many devices, if you look around you will see that there are many active members here (expecting one in particular to comment here when she sees your question) both with heart block and with a lifetime of pacers, some starting as children.  There was a teen or two here asking questions this year, and a couple-three parents concerned about pacers for their children and what life with a pacer is like.  It was a couple of decades from my first pacer to finding this site, I was alone in the dark on pacers other than what I could get from my docs, and I had a couple of really really good docs during that time.

My first docs rule was if you get a new lead you spend the night, so three of the five I stayed the night.  Not typical, normally the first one you will, its no big deal, to be honest you wont be sleeping much that first night anyway, might as well get the extra antibiotics.

Recovery varies, both by person, by the device number, by the second or third you think you are a pro, but then you get a stiff shoulder.  For each device implant the recovery varies as well in that some things you feel you can do in a few days like drive.  Sleeping through the night in any position may take days or a week or two.  Sleeping on the side the device was implanted even longer.  Using both arms to wash your hair, comfortably being able to move that arm fully.   This sounds horrible but the reality is the whole thing is over in a relatively short time.   You get a first visit a few weeks after the implant, with a first device they do some tuning at that point, their little box can mess with your pacer and as they test the leads it will feel strange, one test feels like someone is sitting on your chest another they speed you up and you breath harder, but rest assured they put it all back after only a few seconds, and leave you either with some tweaked settings or how you came in.  A few months after the implant is the second visit, same deal, check the site, do an interrogation, test the leads, etc.  With new leads it takes a while for the scar tissue to form which affects the electrical performance, that plus other factors, it may take that first year or first few visits to get your device tuned.  After that, even from device to device they can use the same settings and its smooth sailing generally.  Unless they need additional visits that first year they may do another 6 month or start the annual visits, depends on where you live with the new (relative to my experience) take home boxes some places you only come in if the take home box indicates there is a need to.  My experience is annual visits until the battery starts to taper off and then the visits increase, I had the older phone boxes and would do those in between.  I dont have a take home box my punishment is 6 month visits, will see what they do when the device gets closer to the end.

The devices have more than one safety mode, I have had mine go into that, and am told by my current doc that insurance is likely going to start forcing the docs to wait for that before replacing the devices, stretching out the life of the device as much as they can.  The device will set you at a fixed rate of 65bpm, which you can feel if you try to climb stairs and stuff your heart does not respond to the demand, which if your take home box has not already done it, that will prompt you to call the doc, get a visit, and find it is time.  The battery can last for months in this mode, its not fun being out of breath and not being able to do stuff for a few weeks while they get you into surgery, but its not life threatening.

Thats about it life with a pacer, the realty of it is its like your belly button you simply dont think about it, its there, you know you have it but you just dont think about it.  Well after the first so many months on the first device, you will have all the normal anxieties, about this feels strange is that normal.  This product has a pacer warning, should I be worried.  There is a very very very short list of products you cant use, but a long list of lawyers burning cheap ink to put warnings on stuff just to ward off frivilous lawsuits.  You CAN go through metal detectors (it just might upset the TSA as they dont actually know what you can and cant do, you might set off the metal detector then have to explain), you cannot hug power line transformers nor generators.  Welders are supposedly no go, have not tested that myself...yet.  MRIs are a maybe, depends on your device, leads, and the MRI.  I was told absolutely not when they first came out, have not needed one thankfully.  There are folks here that have been in them no problem, but I have 32 year old leads, long before MRIs.  coffee makers and toothbrushes and microwaves and tvs and hair dryers and razors and refrigerators and a myriad of other household items with power switches that might have a warning.  Not a problem. 

You can do the sports you like you can do sports that maybe you couldnt or shouldnt do with heart block.  I stopped telling my doc what I was doing pre-pacer when he told me "people in your condition have died from a stunt like that".

Enough for now.  I highly recommend when you see your doc again, or if you are currently not satisfied with this doc get an appt soon with another.  Whichever have them show you your EKG and show you what heart block looks like, it is pretty easy to see the A and V pulses and how they are out of sync from each other, if you think about what we learned in grade school, a complete block means that the heart is not working very efficiently at all, the Atria are not feeding the Ventricals at the right time, everything has to work harder because they are fighting each other rather that working smoothy.

This is a wonderful site full of countless decades of experience.  yes many folks here are new or afraid or have real problems.  As pointed out in a post above or if you read reviews on online shopping sites, the folks that leave the comments are the ones with issues, the folks without issues dont comment much.  The vast majority as in almost all implants go without problems, smooth sailing, replacements, etc.  There are many what to expect questions here, and you will get the same stories from various folks, days of this weeks of that, all good after a short while.

If you are going to have a heart problem that needs a pacer, heart block is the one you want. 

Find a doc you trust then trust the doc you found, stick with them as long as you can.

your other questions hope for 10 years plus or minus per device, some will be shorter, and hopefully some longer (number 4 was supposed to be a 13 year model).  I am 32 years on one lead and 27 on another, no reason to expect problems with them at this point.  Again complete heart block is the heart problem you want if you have to have a heart problem.  you can live on pacers until something else goes wrong.  Your whole life basically. 

We have all been through one or more surgeries, it is not a difficult surgery, open a small pocket in your shoulder, run the wires, plug them into the device, sew it up send you home.  Replacements you are on your way home normally a few hours after you arrive.  Open the pocket, unplug the wires, plug the wires into the new device, sew it up, send you home.

Sorry for such a long post, congrats if you have read all the way through.  You will be like me someday well over half your life on pacers with lots of experience.  I covered just about all of it thus the long post, much of which you wont experience for years to come (tail end of device 1 and start of device 2).

Unlike my journey, you are not alone.  Keep asking questions, both here and with your doc.  Hopefully this was caught early enough and you may have years before you need your first device, either way, weeks or years, it isnt a big deal.

Getting pacemaker :)

by Sana - 2019-10-20 03:23:56

Thank you much everyone... I was afraid at first...feeling a lot better now

I will be getting my first pace maker next month..