New to Pacemakers

Hi everyone!

I am a new patient recently diagnosed with Bradycardia and referred for a Pacemaker. I can't get in for an Echo until February and after that the doctors determine when they will see me and that probably won't be until March.

Meanwhile I do my best to cope with waking up 3 or 4 times a night with difficulty breathing. On my Holter test I had episodes where my heart would stop for 3-6 beats with a heart rate down to 30.

I assume this is not that dramatic since there is no rush to get me in. But I can't find answers to my main questions and so am hoping maybe someone from here can help. Will I die soon without a Pacemaker or simply continue with the discomfort and anxiety produced by a slow heart? Because I have other serious medical problems I am thinking about not getting one. I am 73 and so don't have that many years left anyway and already have a low quality of life medically.

From reading other posts it sounds like it can take a couple of years to become comfortable with one. And once it's in it's in. 
Do others refuse pacemakers?

Thanks!


4 Comments

Bradycardia

by AgentX86 - 2021-01-06 23:34:07

What you're experiencing is a lot more than Bradycardia,  You're having sinus pauses or asystoles.  Three to six skipped beats is a *lot*.  Assuming a base heart rate of 60bpm, thats up to six seconds.  Because of the Bradycardia, if the reference is 40bpm, that's nine seconds and at 30bpm, twelve seconds.  Even at six seconds, you're in risk of syncope and injury.  If you happened to be driving or at the top of a flight of stairs, even, it coulld be fatal to you or someone else.  If you drive, stop. You're a menace until you get a pacemaker. If you ever pass out, even when you're not driving, you'll lose your license until you get a PM.

The way these things work is that once your heart stops, the time to restart is completely random (chaotic, actually).  These sorts of things follow a gaussian distribution with some mean and tails of the probability cuve tailing off.  That tail, while an improbability goes to infinity.  The worse things get, the higher probability that the point of no return is significant => SCA.

I had an asystole of 8 seconds (measured by an event monitor) on a Friday and had a pacemaker the following Monday.  My EP suggested that I spend the weekend in the hospital so they could watch me more closely.  That was only eight seconds. I had many instances of three seconds on Holter monitors but three wasn't considered immediately dangerous. Anything over five means a pacemaker.

I don't have all of your numbers (how skipped beats relates to time) but if my assumptions are right, waiting until March is very risky (stupid). You can certainly refuse a pacemaker, or any other life-saving procedure.  That's up to you but understand the consequences. At 73, you're still young.  You don't say what your other issues are but think long an hard before you refuse one.

It doesn't take a couple of years to become comfortable.  It may take that long before you think of it as often as your bellybutton but you will no longer be bothered by it long before that.  I would probably only think of mine more than once a month if I didn't participate in this club.

Confusing

by Rubye - 2021-01-07 00:45:08

Thank you but I don't really understand what you said except that it sounds very serious. However, the cardiologist I saw yesterday didn't seem concerned at all. I'll call my pcp and ask her to explain. She's just out of town right now.

Yeah, I quit driving around 5 years ago. And right now I basically watch tv and walk the dog. :) Fatigue and serious difficulty breathing. 

Can you recommend a site or resource where I can learn what it is you just said? 
Thank you!

Couple of things

by jcb - 2021-01-07 10:06:53

1. The way you are presenting things will trigger a lot of us in saying you'll need a pacemaker ASAP. That is because skipping 3-6 beats in a row leads to long pauses and there is a significant chance that a heart will not  restart after such a long pause. Then again, it might also be that you perhaps misunderstood what was said, so it is indeed best to ask your pcp and/or cardiologist for further explanation.

2. Healing is closer to weeks than it is to months and much of the healing is not being able to use your arm intensively for a while like in weightlifting, playing golf etc. 

3. Not having a good blood circulation will affect your body in all sorts of ways, so improving that by placing a pacemaker will likely lead to feeling better overall, despite having other issues.

Reassurance is needed

by Gemita - 2021-01-07 10:26:58

Rubye, 

No one knows when our time is up but while we are living it is important that we try to live well and that means living well with our health conditions too, whatever they may be.  I think your immediate situation can be improved if you receive the right care now.  The best place to start is with your general doctor and if she/he feels that you need your pacemaker sooner rather than later, then it will be up to her/him to refer you for urgent treatment.

I am 72, with multiple health problems.  I too had to wait for my pacemaker for far too long.  My pacemaker has been a blessing.  Yes it may take a little while to settle in and yes there may be initial discomfort but my goodness what a magical little device it has turned out to be, keeping my heart steady and allowing me to carry out many daily activities that I could not manage before my implant.  Every part of my body functions better with my pacemaker.

I am assuming that you would benefit from a pacemaker and that you have had a number of tests to confirm your need for one.  I see you have had a Holter monitor which confirmed pausing and a low heart rate.  Have you had an investigation for sleep apnea as the cause for your difficulty breathing at night?  Did they see any evidence of any other arrhythmia apart from bradycardia as a cause for your breathing distress ?  These are questions for your doctors.

Try not to feel confused or anxious about your situation.  I am sure your doctors are aware of your needs and will step in if you need urgent help.  Your cardiologist knows your situation best.   You can also ask us here many questions about Bradycardia.  Many of us suffer from it.  I suffer from bradycardia.  Very briefly, bradycardia causes a slow heart beat and when my heart beats slowly it can make me feel very tired, very cold and causes other symptoms like brain fog (poor concentration), dizziness, maybe even faints if the heart rate goes too low.  It also affects how my body works.  With a slow heart rate for example, my bowel becomes sluggish and constipation becomes more of a problem.   Because a slow heart beat can affect every bodily function and reduce my blood pressure too, I was always cold prior to my pacemaker.  Now I have a new lease of life and everything is working better.  I hope it will be the same for you too soon.

 

 

 

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