Pacemaker : How can I get proper answers?

Hello everbody,

I am a 36 years old Canadian male with a pacemaker. I suffered from Night Bradycardia (3-11 seconds pauses a few times a night).

It is hard to get answers from my cardiologist.

Me : Why could be the cause of night bradycardia since my heart passed all the test?
Cardiologist : It could be many things. For example it could be a problem with your adrenaline. Who hell knows?

Me: Why did you implement 2 leads?
Cardiologist : 2 leads is better. This is the one we implement by default.

Me : So my pacemaker is going to fire only when heartbeat goes too low?
Cardiologist : Yes, it is setup to fire at 60 seconds.

Me : Yeah but my natural heart beat is between 60-70. Am I going to sleep with a heartbeat of 60 seconds?
Cardiologist : mmm, yeah that might too high and we want to save battery. I am going to setup your pacemaker at 46 which is your average when you sleep.

Pacemaker technician : "I can't setup your pacemaker to fire lower than 46. You choose...45 or 50?
Me: ???? ok....45

6 weeks later...
Pacemaker Technician : "It looks like that the second lead is not in use at all. The 2 parts of your heart synchronise well together . Also, your pacemaker is correcting your heart rhythm 12% of time depending of your effort?"
Me : What is that? I have been told that my pacemaker will fire only below 45?
Pacemaker Technician : We can ask the cardiologist a permission to set it off if you want?
Me : (a bit angry) It is ok, I think I will take an appointment with her personally.

4 weeks later...
Me : I was not aware that my pacemaker is working at anytime to correct my heart beat. Why is that so?
Cardiologist : Well the pacemaker can make your heartbeat to go slower or faster. (obviously trying to avoid my question)
Me : Why do I need that???
Cardiologist : Let me look at your pacemaker records. (She looks in her files and she could not find it). Lets meet in 2 weeks and I will see if I can set it off.


She also mention in my pacemaker report that I was really symptomatic when I got to the hospital for my surgery. That is not true at all. They woke me up 3 times the night before I got my pacemaker because my heart pause. Again, I had no symptoms at all.

Am I dreaming? Are they lying or doing whatever they want for some reasons?

Is it the same situation in USA?

Thanks

[Jerry_NJ]

Gee, and a lot of the US advocates of governmental intervention in health care say "look at Canada"...

I think in the US most of us would simply change our doctor if we got the kind of responses you describe.

I know a couple of people with Pacemakers and they seem to get along fine with the devices.  I don't now how it feels when the Pacemaker "kicks in", but it is clear if there is a real chance that one's hear may just stop, it is time to have a Pacemaker set at some lower limit.  As I think I read, you are trying to set the lower limit below what you heart likes to "run" at when at rest/sleeping.  Seems reasonable to me.

[mariop]

There's a site with most of the members being pacemaker dependent.  Lots of people do have problems with their pacemakers. I think you would probably get better information there.  

pacemakerclub.com

[BobPaul]

Health Care in Canada is cheap. And most of employers offer extended health insurance that covers what the provincial medical plan does not. This is the only advantage.

Health Care workers are well protected by their association and union. It brings a lot of laziness!

There is no such thing as seeing ER nurses talking about their weekend and making jokes while there are some people in pain waiting. They should do that at their break or when it is quiet.

I do fine with my pacemaker since I forget completely about it. I just want some answers and make sure they did everything. Things that could trigger bradycardia: Thyroid disorder, Potassium deficiency, Sleep Apnea...  I am the one who ask to be tested for these. How can I get trust in doctors if they don't do their job?

[BobPaul]

Thanks for the website.

I am not pacemaker dependent since I was living fine without one before. But I believe it is safer for me to have one. I don't want one day to lose conscious while I am driving or to become stupid because I did not get enough oxygen to my brain during the night.

Also I could have died while sleeping which is not a really bad thing. Everybody wishes to die like that when time comes.

[Jerry_NJ]

Great observations in both the above posts!

[bobad]

Doctors tend to get testy when they don't know the answers to your questions. The truth is, very seldom do they not know precisely why you have bradycardia (or other arrhythmias). It usually doesn't matter anyway, because there is no treatment other than meds and/or a pacemaker.

Usually bradycardia patients are set to ~50 minimum. Below 50, the PM kicks in. If the heart begins to beat faster on its own, the PM shuts off. In your case, the PM may run all night while you sleep. That would give you ~20-30% regulaiton, depending on how much and how deeply you sleep.

Are you saying one of your leads is defective and not working, or just not activated?

I can't imagine allowing any member of a union to cut on me, attaching anything to my heart, or even monitoring it. Patients already have trust and competency worries, and I wouldnt't want to add labor issues into the mix. :)

Best of luck and health,,,

[BLM_56]

My heart goes out to you, m'friend.  I have a single lead pacemaker installed and have had no problems with it.  My AV node was ablated so I am essentially dependent on the device.  I have had my EP (love the man like a brother) drop it to its lowest setting (30bpm) and what is left of my AV node works fine at a fairly regular 40-42 bpm.  I can retain consciousness at that rate although I would not feel competent to drive.  Mine runs at a steady 60bpm now and a VERY modest 1.125 volts.  I never heard anything about a pacer being able to slow heartrate.  Even with the device running at 30bpm my AV paces itself at 40-42.  I know of no mechanism whereby electrical stimulous of a muscle could slow things down.  Speed it UP, OK.  

I don't know what your Dr. is talking about "two leads is better".  The companies make different devices with differing numbers of leads to control different problems.  If a Dr. started slinging "bovine scatology" (as Stomin' Norman put it) like that I'd be looking for another physician - pronto.  

I don't know about the other two possible brady causes you mentioned but sleep apnea is more likely to cause HIGHER heartrate than lower.  Think about it.  When you are having a bout of apnea you aren't breathing (hence the name a, pnea, no breath) your oxygen level falls off and your heart's only response to that would be to INCREASE heartrate.

MAN am I glad I live this side of the border.  All the talk in DC about nationalizing the healthcare system scares the bejeezus outta me.  About nine years or so from now I'm gonna be looking at needing a replacement device.  Ain't so sure they'll spend the money on a 67 yr old type II diabetic with other minor problems.  The bureaucrats might just decide to write me off..

[Jifizap53]

I have an implanted defibrillator which includes a pacemaker.  My pacemaker was originally set to kick in only when my heart rate went below 50 beats per minute.  I felt awful when it was that slow.  My primary care doctor insisted the pacemaker doctor set it at 70 beats per minute, and that helped immensely.  It doesn't matter if the norm is 50--if you feel better at a higher rate, ask them to set it higher.  I also have two leads - one to pace the bottom and one to pace the top.  I am paced over 80% of the time, but I never notice it.

[aimsdel]

I'm a 36 year old female with a pacemaker. I had mine put in in 1998 they told me I wasn't 100 percent dependent. I found out this year apparently i am 100 percent dependent on it.??what the heck??? I guess the first doctor wasn't sure? When ever I have a problem I asked the doctor he doesn't know. Hekinda shrugs his sholders. He is super nice but what i've learned is the technician usually knows more about the whole thing than he does. And when she is in doubt I call the lady that works from Medronic that goes into my surgeries with me. There should be a number on the card they give you with your pacer. They seem to know more than anyone. I know its frustrating, I'm sorry.

[jeannie39]

My husband ended up at UCSD san diego 6 years ago with 2 or 3 weeks to live. I had to fight to get him there. He had an oblation (ablation) done, he had afib, and got a pacemaker/defibrilator. He is pacemaker dependent. He has to go in now for a 2nd oblation (ablation) and i have learned something else new. Your body parts keep growing as long and you live. Probably thank God for that! But, a part is now bothering his pacemaker and making it only 50 % effective so that needs to be fixed. There are some good sites on line re people with pacemakers and if i were all of you i would go to one of them. They are really interesting and helpful. Pacemaker people range all ages.Good Luck and God Bless. Jean

[Piparskeggr]

Good thoughts all and well written;

I had a pacemaker implanted April 16, 2008 for Sinus Arrest; Bradycardia was not mentioned, the heart just flat lines after normal beats, then starts up again.

The monitored pauses during the night before the pacemaker procedure were from 5 - 28 seconds long and 13 in number; occurring between 20:00 and 05:00.  My Sinus Node looks like it wants to nap when I am asleep.

I have private insurance through my employer here in the US, and have a fantastic set of memories of the interactions with all the medical personnel involved in my diagnosis and care, fortunately it looks.

My pacer is set to kick in if I go below 50 BPM.

A few weeks after the implantation I was pacing about 8% Atrial and 2 1/2% Ventricular (2 lead, Medtronic pacer).  A few weeks ago at the 14 month checkup; down to 5 1/2% Atrial and 1/2% Ventricular.

Hopefully, this is an indication that my heart's electrical system is relearning how to do the job.

Bob Paul, I am by nature an optimist.  I hope my progress is an indication that, with time, your heart will relearn its task, too.

take care - Pip

[HelenM248]

Every person's indication for having a pmk implanted is different. It sounds like your issue is that your sinus node (the heart's natural pmk) was too slow at night but that you have normal electrical conduction through the heart once the atrium (top chamber of the heart) is stimulated.

The reason it is better to have 2 leads (one in the Right Atrium and one in the Right Ventricle) is that in your case the top wire needs to stimulate your atrium at times and then the conduction flows naturally to the ventricle. The bottom wire (Ventricle) is there if you were to need it, but if you have normal conduction once the atrium is stimulated, you may not need to use it very often or not at all.

A study was done called the David Trial that concluded that pacing or stimulating the ventricle when not necessary could cause a weakened heart muscle down the road.  I am not positive, but when the technician said you are only using one lead...it sounds like you are only using the atrial (top) lead just to get the electrical impulse started. This is the best set-up for you if you are not dependent on the pmk.

A pmk cannot make your heart go slower. Only a defibrillator (ICD) can shock the heart into a normal rhythm if it is going too fast. A pmk can only keep the heart rate from going too slow. A "lower rate limit" is programmed on the parameter settings of your device to keep your heart rate from going below a certain point. Usually 50 - 70 beats is the lower rate limit, although it can be programmed below this number or above. The device works on "demand pacing." It watches to make sure your heart rate comes in at or above the "lower rate limit" and will only pace the heart if your own heart rate does not come in at or above the lower rate limit.  

They are many sites on the web that explain more about pmks if you are not getting the answers you are comfortable with. Heart Rhythm Society and Medtronic, Boston Scientific, and St Jude all have patient education sites that may help you. It would be important for you to know which wire is the only one working. Is it the top (atrium) wire or the bottom (ventricular wire). If it is the top wire, as I think, it means your atrium just needs to be stimulated and then the electrical conduction flows naturally down thru your bottom chambers (ventricle) of the heart. The bottom wire in this case is working and monitoring at all times....but you do not require ventricular pacing.  

[PikaPika88]

Pacemaker can top up the heart rate when brady.  Pacemaker also can pace out the tachy and abnormal rhythm.  I'm very confident of that.  It depends what kind of pacemaker that you have and how they want to programme it.

Yes, long term pacing the right ventricle can cause heart failure.  I told my EP that I don't want that to be happened.  I asked to turn off my pacer because I'm too scared of my heart fail.  (The present of this 7 years old pacemaker is my number 4.)  He then set the Atrial lead to sense.  Ventricle lead to pace (Only pace when necessary).  Any abnormal rhythm or unwanted rhythm that the Atrial lead sensed, the ventricle lead will pace it out.  Doesn't matter if tachy, brady or fib, it will pace at 60 until my heart rate and rhythm get back to normal.  Then the ventricle lead went back to "stand by".

Even though I have the pacemaker, my heart still get pause longer than 2.5sec.  The pacemaker which has a built in holter didn't catch this.  It was caught by a 24 hours holter monitor.  Mine pause was happening in the afternoon 2pm.  My EP said many people still gets pause with the pacemaker.  He can't explaint it but it is pretty normal.

BobPaul, it is funny that I asked my EP to turn it down.  He asked me back "Do you know where his doctor turn it down?"  I told him I'll go to internet and ask him.  Unfortunately, that person told me "he don't know where his doctor turn it down."  My EP try to turn it down from 70 to 65.  He told me if nothing wrong, after six months then he will turn it down to 60.  I'm now in 60 more than a year.