Pacemaker implantation decision

Hi

I'm 53 yo and so far have enjoyed a very active life in terms of exercise & sports. Love to run, swim, bike, row, windsurf, kitesurf, ski, etc, etc...

About 6 months ago I started experincing an abrupt lack of energy while running or cycling after the first 10 minutes of exercise, and in coincidence with an abrupt drop in HR from 130 to 90 BPM. I've always been a low HR person and my physician used to attribute it to an athletic condition, but after consulting a cardiologist it turned to be a SSS case with Chronotropic Incompetence that just got worse in the last months. My max HR used to be 150.

Apparently, the solution to recover my physical capabilities is a pacemaker, but the information about up to what extent this will be a good solution is quite contradictory. Even some cardiologic surgeons have advised me to start a psycological treatment to let go running to avoid living with a pacemaker.

So my question to this community is, have any of you gone through this process, what was your decision and how did it work for you?

 

Thanks

Emilio


12 Comments

Amazing

by AgentX86 - 2018-08-07 22:44:56

You may never be an 18 year old again but there is no reason a pacemaker won't get you back to an active lifestyle.   The rate response of a pacemaker is no match for a healthy SI node but it'll work. There is absolutly no reason you'd have to give up anything listed above (cage fighting, perhaps ;-).

There is always a risk of complications but from what you've said above, you have two big things going for you.  First, other than your SSS, it seems your heart is in very good condition.  A lot people with pacemakers aren't so fortunate.  Second, you don't seem to be the type to sit on the couch crying in his beer.  Attitude means a lot.

Take your time

by Gotrhythm - 2018-08-08 15:50:14

Have you seen an Electrophysiologist? That's a cariologist who specializes in rhythm disorders? If you haven't, you really should--and see one who deals with very fit, comparatively younger patients.

When you say you are advised to "let go running to avoid living with a pacemaker?" does that mean you are only symptomatic when running?

If so, it certainly sounds like you don't have to have a pacemaker right now. Taking the time now to gather data about pacemakers--some have functions that are better for athletes and very active people--will help you make a solid decision.

 

so...,

by The real Patch - 2018-08-08 18:52:31

what will these idiots want you to give up next? Perhaps driving because you black out from low heart rate. And what about working because you don't think clearly due to low heart rate. Oh and lets not forget you'll need to give up sex, cause you just aren't "UP" to it.

Then again you could get a pacemaker and live a normal life. Your choice.

Say yes to running!

by phadzip - 2018-08-08 18:52:54

I got my pacemaker just over 3 weeks ago and plan on returning to running. Maybe even add another marathon to my list. My electrophysiologist said I would be able to do whatever I could do before getting the pacemaker, even marathons. But don't do them, he said. Electrophysiologists tend not to like them. My cardiologist on the other hand is into extreme sports and has not discouraged me.

Running has been very important to me. I accept that I might not get into marathon shape again, but I am encouraged by my progress. An energy that I did not have before my surgery has returned. I have even done a little gentle jogging during my long recovery walks.

It feels good and for the first time in a long time, I feel like I could come back. When I get the all-clear later this month, I will register for a 5K race.

Good luck!

Thanks!

by Emilio - 2018-08-08 19:06:22

Thanks you all for the encouraging comments!!

 

Chronotropic Incompetency or AV block

by AgentX86 - 2018-08-09 22:34:32

I don't understand why you'd have to "negotiate" a DDDR pacemaker. The heart block means you need ventricular pacing, in addition to the atrial pacing that bradycardia indicates. Chronotropic incompetency means rate response is needed. Was your cardiologist really only going to do half the job?  If so, ditch the quack.

Perfect Candidate for a Pacemaker

by frankmcw - 2018-08-11 03:18:21

Hi Emilio,

It sounds like you are in excellent physical condition, except for the electrical system in your heart. That was my situation 3 years ago, having been diagnosed with SSS, AV Block, & Bradycardia. It even seemed weird to me that I had to see a cardiologist in the first place, but the symptoms were unmistakable. My cardiologist immediately recommended a PM and I am very glad to have one installed. I am back to running 5 mile races, along with bicycling, mountain climbing, and all the excercising I love. Make sure to have a duel lead PM with some type of Accelerometer or Rate Response capability. (These features allow the PM to deal with AV Block and also enables the PM to read your body motion during excercise and elevate your heart rate accordingly.) I have a Medtronic Advisa A2DR01 but there are other PM’s that will do the job. Of all the things that can go wrong with the heart, we are lucky to have a condition that can be easily remedied, (with a Pace Maker). Don’t hesitate.

I think you have a heart block.

by Tiffsterty - 2018-08-11 17:23:14

I too had the same thing. When exercising my HR would go from 150 to 75 abruptly. I was diagnosed with second degree 2:1 Heart block exercise induced. I wore a 2 wk heart patch and had an EP study to confirm this. My only option is a pacemaker. Sucks! I won’t die from this but it does make it difficult to exercise because I get short of breath and I feel like someone is punching me in my chest over and over. You didn’t mention symptoms when your HR drops. I got diagnosed in April and I’m scheduled for a PM in 2 wks and I’m already getting cold feet. I’m debating waiting longer. I can no longer run, hike hills or lift heavy weights. I can only play golf!! :). So go see an EP doctor and get a HR patch to see what’s going on. 

Heart Block

by frankmcw - 2018-08-12 01:35:38

Yes, Emelio’s problem could also be Heart Block along with Chronotopic Incompetence and Bradycardia. But it doesn’t really make any difference, because a pacemaker will easily remedy all those conditions. It is common for anyone who suffers from one of those conditions to suffer from all of them, because they are all a failing of the hearts natural electrical system. It is also very difficult to diagnose the exact problem, because it is not unlike trying to fix an automobile that has an intermittent electrical issue. In my case, I had several occurrences of Heart Block during running competitions. But it was impossible to duplicate it in the clinic. So after wearing a heart event monitor 24x7 it was extreme Bradycardia that got me fitted with a pacemaker. The good news is that a Dual Lead pacemaker will correct all those electrical malfunctions of your heart. There is no other solution to the problem and from my own experience and from what research I’ve done, it appears that the condition will only worsen over time. The sooner you get a pacemaker, the sooner you will be able to restore your physical fitness and get back to feeling good all the time.

Getting a P M

by leepacer - 2018-08-24 01:42:55

My sons friend's mother needed a PM at the same time I did. She waited wouldn't do it she died. The answer for you is simple you only one heart and a PM will keep you alive. 

DO WHAT YOUR DOCTORS RECOMMEND !!

Bradycardia

by Zeb - 2018-09-03 17:09:17

hi Emilio, I have been through a similar situation last mid April. I am 53 yrs old and I was running not less than 30km per week just for fun and to be in good shape. The bpm at rest was 39 and I had no problems at all nor black outs. I started to investigate on March 2017 with an Holter that revealed several pauses with 4 sec average the longest 5 sec. Then I was asked to stop running for three months and back again to be tested with another Holter who revealed that pauses got smaller in numbers and lasting less (the longest was 3,5sec). Then they asked me to get back running to check the Holter after 3 months and see if pauses were increasing. Unfortunately or fortunately I badly stretched my muscles and I had to stop for a couple of months. I forgot to do the Holter test and last March I went for an Holter even if I was not at the same level of fit and surprisingly the pauses in the night increased in numbers and timing. Then they decided to go for an electrophysiological exam and it was negative. They said that the conduction of my heart was perfect, however they implanted a loop recorder to monitor. In the next 3 weeks they recorded a significant bradycardia despite I was not exercising, and several 5 secs pauses and after recording a 9 sec pauses they strongly recommended me to implant a PM and I have one since April 17th. This long story is to say that you need facts to take decisions like if to implant a PM. On the patient side is not easy to accept a PM and to do it you need to convince yourself that it is useful. I was struggling to accept and it is thank you to the people in the forum that I started to accept it. 

Last one: yes with the PM your performances will be better but honestly I would have preferred to keep my old “bad” performances without my new PM “friend”. 

In hurry pick  up a clinic of excellence and listen different doctors  and decide which one you will trust and then trust and follow  their guidances  

Let us know your next step if you like. 

Good luck. 

G

Still thinking and gathering information

by Emilio - 2018-09-03 18:54:06

Thanks Zeb for sharing your story, and by the way, to all the rest in this thread.

The fact is that "unfortunatelly" I found that there are still certain activities that I can do without any evindence of chronotropic imcompetence, like swimming or rowing. The same with windsurf.

So the only activities that I'm definitely limited at so far are running and cycling. (Besides some unexpected palpitations that the doctor could not tell if they are part of the same problem).

My sensation is that my heart is behaving quite erratically, but no hard evidence of this.

When I said unfortunatelly is because I"m like in a border case (at least up to now) and seems to be that the only justification for a PM would be to keep running and cycling, what sounds like to small of a limitation to enter into the PM club full membership. I don't know.

This is what I'm struggling with these days.

Thanks again to all of you. Your shared experiences have been of great help in my last doctor visit to make the right questions.

Emilio

 

 

 

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Member Quotes

The pacer systems are really very reliable. The main problem is the incompetent programming of them. If yours is working well for you, get on with life and enjoy it. You probably are more at risk of problems with a valve job than the pacer.