Should I get a pacemaker? What is your experience with them

should you get a pacemaker

by new to pace.... - 2024-01-02 19:26:32

One pause is to many.  I am not a medical person.  Yes I think you should.  You can lead a very good life, many have after getting a pacemaker.  While you are waiting for others to respond.  Use the search box to ask your questions.  Click on what looks like a magnifying glass next to logout.  

new to pace

SSS and pacemaker

by islandgirl - 2024-01-02 19:39:49

I kept putting mine off. Don't wait too long.  I waited months, being hardheaded and surprised with the diagnosis.  My EP had me wear a monitor for a couple of weeks and I began getting phone calls at all hours of the day and night  from the monitor company telling me to get up and walk around.  Mine ended up being an emergency.

Hi✌🏼

by Lavender - 2024-01-02 21:48:48

My pacemaker wasn't a choice. It was a must. I had a 33 second pause. Near death experience. I had been pausing for six months. Some very brief pauses but it escalated to the danger zone. 
Believe me, once the pacemaker is put in, I wouldn't want it out of me. It's keeping me alive. I have had it almost two years.
 

Of course I was sad about needing it. I was feeling broken and old. I was a bit younger than you are now. But you know what? Babies get them. Whoever has a flickering heart needs it. This issue can be progressive. If you trust your cardiologist, take his advice and be proactive. 

Hi 👋 JIMMI2

by Wendells - 2024-01-03 04:32:52

I argued with my dr for 12 months, having little episodes like you are having . Him saying there was no problem.  But 12 months on they were getting worse. Finally he got me a monitor to wear for 2 days.  And finally he realised I did have a problem,  my heart kept stopping, like you it was only lasting a few seconds but eventually started happening more often. Cardiologist recommended pacemaker and I'm pretty happy 3 year on and no more problem. 

Pacemaker for SSS?

by Penguin - 2024-01-03 10:25:02

I'd follow medical advice and agree to a pacemaker if it is indicated.  SSS is a progressive condition and if you are having pauses and symptoms now, it is likely that these symptoms will progress at some stage.  You could wait, but the symptoms e.g. fainting / collapsing aren't easy to manage. Think about driving for example! 

In terms of having a pacemaker for SSS, pacing is a good treatment and I'm not sure if there's an alternative e.g. effective drugs??  The pacemaker will prevent the symptoms (fainting, dizziness) and jump in to pace you when you have pauses. It can be programmed to treat bradycardia (slow heart rate) so that your heart beats regularly and more frequently (e.g. to 50-60 bpm resting rate) and so that it increases your heart rate when exercising if you need some help with this too. 

The post operative period is probably the main downside, and getting used to living with a device under your skin.  Both take a little time but most people manage very well and report that recovery is pretty quick whilst getting used to the device / implant is a more personal response and varies. 

Many of us don't need drugs to supplement pacemaker treatment for SSS. You may or may not consider this a benefit. 

I hope this helps. 

I understand!

by PacedNRunning - 2024-01-03 17:47:51

I felt this way when I was told I need a pacemaker. My EP ran more tests to make absolute sure I needed a pacemaker.  Mainly because I was 46 years old at the time and second I was safe to wait until we made sure. They usually recommend a pacemaker for any pause >3 seconds especially with symptoms. It's to keep you safe and if they can't rule out a reversible cause, then the pacemaker is the best option.  

You'll be ok!  I've had mine and my life is no different. Just safer. :) 

Getting a pacemaker

by Good Dog - 2024-01-04 07:10:05

I am not a doctor so I cannot say what is best from a medical standpoint. However, from a personal and practical one at 70 years old; I think a pacemaker is a no-brainer based upon your sss diagnosis and the Docs suggestion. A sick sinus syndrome can be remedied by a pacemaker. At least the pauses and slow beats. A pacemaker can save your life, but just as importantly; it can give you a significantly improved quality of life. It can remove much of the worry you have now and give you a peace of mind you have not had. The thing about a PM is that it does no harm. Only good. Your life can go on completely normally and you can live to a ripe old age without worrying about those pauses and the slow rhythm. 

My experience is that I received my PM at the age of 38. Just turned 38 and bam; complete heart block. That was 37 years ago and my life with it has been completely normal. No restrictions and no drugs.

I wish you the best!

Sincerely,

Dave

Yes or no?

by piglet22 - 2024-01-04 07:54:04

If your medic has recommended a pacemaker then go with it.

Do it before the choice is taken away from you and something happens, you end up in A&E and get a device fitted there and then for your own good.

It sounds to me if your symptoms already present a good case for getting one, sooner rather than later.

Your medic might also have told you that many of these heart conditions can get progressively worse, for example Type 1 heart block progressing to types 2 and 3.

It's the same with medication. I was told years ago that when I started hypertension medication, it would be for life and it has been.

Feeling dizzy, possible loss of consciousness are not symptoms to be ignored and could end in disaster or at best severely restrict your way of life like driving etc.

PACE OR NOT

by docklock - 2024-01-04 11:16:42

I got my pacemaker almost a year ago @ 78. 

My cardio guy implanted a Implantable Loop Recorder earlier to monitor my heart. During the time it was in - maybe about 8 months - it showed at least 2 "pauses" of 7 seconds.

I was also diagonsed with SSS and he highly reommend a pacemaker be installed.  I'm paraphrasing him: "Soonder or later that heart isn't gonna start up again."

Have had no problems living with it and I believe it is keeping me alive.  

You will have the final say, of course.  But waiting too long for a decision may impact your life.

I respect my cardio guy and his knowledge. He is a specialist and has spent more time in college and training than I have. Not that he is infailable, but certainly has my best interest at heart (no pun intended).

What you need to know

by Gotrhythm - 2024-01-05 15:36:34

As you can see from the above responses, your reaction being told you need a pacemaker isn't unusual. Many people felt the same and had the same questions.

You said, "If I knew this was a persistent problem..." Your experince tells you the pauses have only happened a few times. Otherwise your heart works fine. You've had other problems that just went away. Maybe it will go away too. Anyway, it's not so bad. You've never passed out. Do you really need a permanent fix for something you could just live with?

But let me tell you what the cardiologist didn't explain to me.

The sinus node, the thing that's "sick" in sick sinus syndrome, is a little collection of cells in the heart that's like a starter switch on your car. It sends out the little electrical burst that sets the rest of the mechnical system in motion.

If you're like me--and most people--you had no idea your heart had a starter switch. But it does, and like it's mechanical counterpart, it can fail, wearout, even though every other part is in good working condition.

Furthermore, at first it may only fail intermittantly. Most times when you turn the key the car starts right up, but sometimes it takes two or three tries. Then, it happens more often, but still, you might go days or weeks between having a problem, and once it starts, it works fine. So you put off taking it to the mechanic. But once the starter begins to go bad it's only a mattter of time before it fails, and you can't start the car at all.

That's true for the sinus node. Once it starts to go bad, it's only going to get worse. It's not the kind of problem that will heal or repair itself.

There's one way a sinus node it not like a starter switch. You only have to turn the starter switch once, and then the engine goes. But the sinus node "starts" your heart's pump for every single beat. 60-120 times a minute. All day and all night.

One more major difference. When you turn the switch on your car, the car is sitting still. Not so, the switch on your heart. You could be driving the freeway with your grandkids in the backseat, walking down concrete steps, atop a ladder, operating a chainsaw. The list of things you are ordinarily competent to do safely, suddenly become potentially deadly--to you and others.

I think you can see the answer to why it's not a problem that the pacemaker can never come out. The problem is a sinus node (switch) that can no longer be trusted. The pacemaker is the solution.

You also asked how much does the pacemaker interfere? Once you are healed from the surgery, my experience is rarely. Yes, I know I have it, but days, weeks, months go by in which I don't give it a thought--because there is no need to. We have members who participate and even compete at every level at any sport you can think of. Anything you are physically able to do now, (including sex) you'll be able to do with a pacemaker. Possibly enjoying it more, because it won't make you so tired.

Don't get me wrong. Pacemakers aren't as good as the healthy sinus node you used to have. But they are more dependable than the sinus node you have now. For getting the sinus node's job done so well that you don't miss it, I would give them a score of 97-99%.

I too have SSS. I got my first pacemaker about 13 years ago. Like you I didn't want it, fought the whole idea. Most of the time, my heart was doing fine! I finally relented when my heartrate suddenly dropped into the 30s, not for a minute or two, but for hours. Now that I've lived with one, with hindsight, I can see I could have used a pacemaker for 10 years before I got one. The thing is, the problem had come on so gradually, that I had forgotten what a regular heartbeat felt like.

By the way, the pacemaker doesn't actually replace your sinus node. You will still have it and it will still function. Right now, that's most of the time, and that will still be true after the pacemaker. The pacemaker simply fills in whenever the sinus node falters, then it just sits and waits until it is needed again. And whether it's the pacemaker working or your sinus node keeping the ol' ticker going, you can't feel the difference. Seriously. It's that slick.

I'm not a doctor, certainly not your doctor. I can't say if you should get a pacemaker. But I will say from my experience, if you do need one, I know of no reason not to have one.

Ditto GotRhythm

by Tracey_E - 2024-01-07 11:18:01

Pauses do not go away, they stay the same sometimes but more often get worse. The pacer is your insurance policy. If it was 2-3 or even 4 second pauses, you could just watch, but 6 is significant. It's hard to accept we have a problem when we generally feel good, but it's better to intervene before it gets bad rather than risk something happen in the mean time. We've had members pass out for the first time while driving or on stairs, then they had to deal with recovery from that in addition to pacer surgery. Doctors don't tell us we need them lightly. 

Once we heal, having the pacer has little impact on our day to day lives, other than keeping us safe. There is nothing I want to do that I cannot. I hike or ski most vacations, work out daily, completed 2 half marathons last year, travel often, go to concerts, ride roller coasters. No one looks at me and sees a heart patient. 

Sounds familiar

by Prof P - 2024-01-07 20:16:38

What you describe sounds very similar to my own situation.  These "pauses" are the message and "a device" is likely to be the best answer.  Many of us have had our lives improved or at least stabilized with a PM.  And, we have resumed our normal activities, often in better shape than before.  

Same problem, definitely wish I had got mine sooner.

by AJL - 2024-01-07 21:38:38

I would say you should follow your doctor's recommendation. The problem is it can seem ok until the one time it isn't. You can experience a pause anywhere anytime. Which means you can pass out on a flight of stairs, in the car, etc. I had a positive tilt table with a 30 second pause and multiple pauses were detected while I was sleeping after I received an implanted heart monitor. Since I'm not yet 40 the doctor was hesitant to put in a pacemaker. Until I had an episode mid flight on a work trip. I have a pacemaker now and only regret not doing it sooner. I wake up more rested and have more energy too, but I also had a very low heart rate.

AJL

by Tracey_E - 2024-01-08 10:40:19

Holding off due to age when we clearly need it is one of my BIG pet peeves!!!! What does age have to do with need?! We are too young to feel bad or be in danger when there is a fix. I should have had mine a good 5 years before I got it, but I was early 20's so they wanted to wait. I was more than a little resentful after as I could have been feeling good all that time. IMO age is never a good reason to wait. 

nothing to fear

by dwelch - 2024-01-25 07:29:55

Media and movies have made pacemakers out to be something they are not and it is annoying at best.  How often do you think about your middle toe or belly button or the third rib on your left side?  That is how often you will think about your pacemaker.

In the movies do folks who have glasses to correct their vision have to be lead around by the arm because they cannot see?

Same goes for mental health, some negative stigma to it, which is stupid, life is so much better.

If the doc thinks you need one and one pause for any period of time is too much as the next one may be forever.  Sounds to me like you should be asking how soon can I get one not should I get one.  Even if the next pause duration is not forever, it may be when driving or going down some stairs and you can end up with even more medical issues or even legal. They knew they had a heart condition, it is documented in medical records, yet still drove a car and killed my clients wife.

If the doctor is on the fence then you can be on the fence, but if the doctor thinks so then there are two choices.  1) how soon can I get one  2) try another doc and then if they say so then beg to have one as soon as possible.  If the doctor is on the fence then that is another reason to rush to see another doc and get their opinion.

Better to be alive and not sure if it is keeping you alive than dead and every one else knowing it probably would have kept you alive.  Sorry about being blunt but those are your choices.