Should ask for my pacemaker now or wait?

Hey. 

Im a 34 yo male who just found out i need a PM.

A bit of history first. For the last year, I've had problems with bradychardia. First i noticed after a tennis game as I almost fainted. Since then Ive had problems with low bpm, presykope and fatigue on and off, most commonly after sports.

Last week i got a REVEAL Linq inserted to monitor my pulse, and it only took my doctor a few days to establish that I have SSS, and will need a pacemaker within a few years. 

My question is, should I wait? The last year was kinda hard, to be honest. Im not excited about needing a PM, but the thought of almost fainting and not being able to perform while exercising any longer doesnt feel any better.

Just recently found this forum and just figured it could be nice to hear from others.

English is my second language so I apologize if my text is difficult to read.

 

Mike


10 Comments

Pacemaker now or wait

by Loonylil - 2016-12-22 15:37:50

hi mike

i know what a shock it is to be told you need a pacemaker, but my gut feeling is that you may be better having it done sooner rather than wait, your situation won't just get better by itself. When it's done you can then recuperate and start living again with confidence!  Best wishes to you

Get it now or wait

by Good Dog - 2016-12-22 16:26:54

It is difficult for anyone but you to answer that question. I kind of agree with the previous post. I think that sooner is better. Thing is..........the benefit of getting one now depends upon your symptoms. Certainly, if it prevents you from passing-out, falling and getting some pretty serious injuies, then yes. If if adds to the quality of your life, then again, yes. Many of us don't realize how much better we'll feel with a PM until we get one. Probably the only reason to wait are the risks associated with getting one. The risks from the implant are really minimal (not much to worry about at all), but there some some minor ones. The only other risks are associated with the longevity of the equipment (leads). The older you are when you get one, the less likely you'll have problems with it as it ages.  

You should know that getting a PM is certainly nothing to be afraid of. 99.9% of the time it is a positive change.

I waited and regretted it

by Tracey_E - 2016-12-22 16:32:13

I put it off as long as possible on my doctor's recommendation, so long that I ended up in emergency surgery. Not the easy way to do it! I had a doctor who didn't want to give a pacemaker to someone young, which in hindsight is a really stupid reason to wait. If we need it, we need it, whatever our age. If you are always tired, if there are things you want to do that you cannot, then it is time to do it. Why suffer when there is a fairly easy fix??

If you pass out, then you have waited too long. We have had members pass out while driving, then they found themselves recovering from a car accident as well as pacemaker surgery. 

I had no idea how bad I was truly feeling that last year until after I was paced and had a normal heart rate again.  It was a huge difference and I resented that the doctor didn't tell me how much better I'd feel, that he didn't encourage it before it was critical. It's hard on the body when we aren't getting the oxygen we need. I got my first one at 27. I'm 50 now, have been through 5 devices, am healthy and active and have never once regretted it. Most of the time I don't even think about it. 

Make sure your surgeon knows that you are active and what sports you play. They can place it a little lower and a little deeper than the usual spot, or sometimes they can put it under the pectora muscle, so it is more comfortable for sports. 

If you have questions about the surgery, recovery, or living with a pacemaker long term, please ask! 

Sooner than later!

by Ileen - 2016-12-22 17:44:37

I agree with everyone They told me I could wait, because I only had a few 3#sec pauses, but learned that can change at anytime, I have a fear of driving over bridges, so thinking I could pass out driving, no way was I waiting! I had mine day before yesterday. Doing well, sore, bored, but looking forward to not being afraid of passing out suddenly. But, it is your decision. I think read some of the stories on here will help you decide. It is not an old persons problem. We are so lucky we have something to fix us up! 🙌  Good luck!Hugs, ileen

Sooner than later

by MikeSwe - 2016-12-22 17:56:11

Wow! I'm overwhelmed by your quick answers! Seems to be a generel consensus towards sooner rather than later. 

Thank you all!

 

My doctor wanted me to send in a few more ecg-episodes (I have a modern thing implanted in me) before finally giving me a final diagnosis. I'll be sure to discuss this with him.

 

As for you who were feeling fatigue and fainting, how did you experience your improvments?

 

Mike

My only regret

by confused - 2016-12-22 19:02:53

Hi and welcome!

So my only regret in getting my pm is that I waited.  I was tired all the time and felt my head was in a bubble constantly.  I had mine put in 9 weeks ago and it's been nothing but a positive change for me.

I was scared and was in denial that I needed one even after being told by the doctor that I did. I had in my mind that people that had pacemakers were always older.  Well I have found out different and age has nothing to do with it.   

So in my case a pacemaker has changed my life for the better!  Like I said the only regret i have is putting it off!   Makes me sad to think I could have felt this good even sooner. 

Good luck in your decision. 

Tammy

How long are you...

by donr - 2016-12-23 09:11:13


...going to live?  Do you know?????

If you make a decision about the PM based on lead longevity, you must be one of those people who do know exactly when you are going to die. 

Face it, the probability that you will see Christmas NEXT year is a lot higher than the probability you will live to celebrate it 25 years from now! 

"Bad news never gets better with time!" (Creighton Abrams, Gen, US Army) You already have bad news - SSS - & your Cardio wants to wait & see what happens?????!!!!!  Your heart has already failed, electrically.  It's NOT going to repair itself.  MOF all the nasty outcomes about nasty things happening while you are driving are a greater probability of occurring than your heart repairing itself.

Tracey is 1000% right!

Donr

improvement

by Tracey_E - 2016-12-23 09:15:12

Everyone recovers differently. If your rate has been very low for a long time, you are going to feel a more profound change than someone who was borderline. For me, it was night and day and I could feel it the moment I woke up in recovery. I got in trouble with the nurses that night for pacing the halls but I was so energized I just couldn't sit still. It was like mainlining coffee. I was no longer dizzy all the time, it felt like my brain was turned back on, and my energy steadily came back over the next few weeks. 

SSS means your rate dips at rest and/or does not go up on exertion. The pacer will be set with a minimum rate, usually 60, that it won't let you get below. So, if you are sleeping and currently your rate dips to 40, the pacer will kick in and keep you above 60. If this is happening, it is making you tired now. The other thing it will do is use rate response, which senses when you are active and raises your rate for you. This means when you work out, your rate will get up higher so you won't feel so bad after.

You'll want to discuss rate response in depth with your doctor in advance because there are three technologies out there that do this and they all work differently so you'll want the one that best suits your needs. Example, some of them only sense motion so  if you cycle that's not a good choice for you because the chest doesn't move much on a bike. Additionally, each of them has a lot of sensitivity settings. They start us out with a good guess but often end up adjusting and fine tuning it later, so know that it may take a few tries to get it just right for you. 

Pacemakers and Sick sinus syndrome- indications for PMs

by Selwyn - 2016-12-23 13:10:46

You can agree or disagree with the guidance for pacemaker insertion given the scenario you describe. In the UK the guidelines are established:

https://www.nice.org.uk/guidance/ta324/chapter/2-Clinical-need-and-practice

Selwyn

Selwyn: Interesting...

by donr - 2016-12-23 23:44:42


...reading.  Took me back to 10th grade in high school & the quote "...em's Mr.Lameter's cows..."

I didn't think I'd ever get to the conclusions/reccomendations - Athough they do substantiate what we have all been saying.  One key observation is a bit hidden about 1/3 of the way through - it essentially says what I did - that bad news never gets better w/ age - though it says it as SSS does tends to progressively get worse with time AND it also tends to progress into atrioventricular blockages.

Donr

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Try to concentrate on how youÂ’re able to be active again and feel normal, rather than on having a machine stuck in your body.