Remove PM

Good morning-
I was happy to see there is a 'club' for pacemaker patients.
I have browsed through the site. I am hoping someone could help me with a decision I have to make.
I am 44 years old and had my PM implanted in 2010 because my HR was around 20ish. When it was first implanted, my PM was used around 80% of the time. Then it was used less and less every time I had to check. Last time was 6 months ago and it was used 13% of the time which I have to assume was when I was sleeping.
With that being said, I have a HUGE deductible, $4,000 a year. I get my PM checked every 6 months since I am so young and in good health. Since my PM is being used to infrequently and my deductible is so high, I am considering having it removed. I asked if it could be turned off but I was told it can't.
I'm not sure if this is normal or not, but sometimes when I sleep on my left side I feel what seems like electric. Sort of like when you walk on carpet and touch someone and get that little shock.
Any input would be GREATLY appreciated.

12 Comments

A thought

by IAN MC - 2013-01-14 01:01:26

I think Inga is giving you very good advice, only by turning down the lower rate will you find out if you need a PM or not.

I am very interested why the % usage of your PM should keep on falling. Inga suggests that your heart may be self-repairing, unlikely but anything is possible !

As an ex-runner ( almost ) I am fascinated that my % PM usage is also falling at every check-up. I am now down to 10 % ( with a lower setting of 50 bpm ) from an original 30 % .

In my case I believe that because I am gradually losing my running fitness my resting HR is increasing so the PM is needed less . I think that resting HRs don't normally change that much but maybe runners create an abnormally low resting HR which increases when they get less fit

Only my theory..probably rubbish; and I realise that I'm assuming that the amount the HR falls is related to the level it starts from, which maybe is not true !

I'm curious , have you maintained your level of fitness since your implant in 2010 ?

Ian










turning it off

by Tracey_E - 2013-01-14 02:01:30

Two words why they won't turn it off... medical malpractice. 13% is still significant usage so it would be safer to try Inga's suggestion first.

PM Removed

by donb - 2013-01-14 02:01:51

Hi, I thought I'd add some of my experience with my pacemaker removed. As I'm a scar tissue keloid patient my 3rd PM eroded and was removed. Originally I needed it because of low HR at rest (low 30's). Well after removal I had tests done & electrically my HR was solid & University hospital diagnosis was that there might have been healing of my heart's electrical conductions and only time would tell if I needed a PM again.
Two months later my heart decided to fall back to it's old habits with HR back to 30 while at rest. I might also add that during those weeks I also had a solid HR without missing beats. Soon after my 4th PM was implanted & all was well again. Regardless of many thoughts on this topic I have learned that In my case that the heart memorizes the low setting & with normal response with activity it would track my needs.
As I recently had to have my 4th PM removed & replaced as
it moved from under muscle site with huge swelling. I also noticed some irregular resting HR as it was set (out of box) for a low setting of 50. Well I had to have it set back to 60 & all is well. This kinda reinforces my theory of HR memory which I've learned with 21 years of PM experience.
DonB

fitness

by Happycamper - 2013-01-14 04:01:02

You have all given great insight and information.
When I asked if my PM could be turned off, I was told there is no way to do that.
At the current rate of 50 BPM, my PM is expected to last another 15 years.
Turning it down to 40 would be a feasible option, then again, it doesn't help with my huge deductible.
I did ask my cardio if it is possible that my heart issue was a transient problem and he said possibly. I have had SEVERAL cardiac tests all of which have been totally normal with the exception of my having myocardial bridging which as nothing to do with the PM
Something else I was wondering. Has anyone had what feels like electric shocks where the PM is? It isn't all the time, just when I lay a certain way. It feels like when you walk on carpet then touch something; that little shock. Nothing painful, just an odd feeling.
Ian, I am actually MORE fit than prior to the implant. I run upwards of 4-5 miles a day, swim a few times a week and lift weights; not to bulk up but rather stay fit. I play basketball, softball and volleyball.
Prior to the PM I ran 3-4 miles and swam.

PS

by Happycamper - 2013-01-14 04:01:09

I have an appointment tomorrow morning with the surgeon who put the PM in; I am anxious to listen to what he says.

thank you

by Happycamper - 2013-01-14 11:01:23

Thank you Daisy for your honesty. One thing I neglected to say is that I am a runner so my HR is normally low. My PM is set at 50 so being less than that would be normal for me. In the 20's wouldn't be. So using the PM 13% of the time would most likely be when I'm sleeping; it wouldn't surprise me that it would drop below 50 :)
I am beyond frustrated; if it could be turned off for a time to see how my heart responds, I would be all in favor of that. But my cardio and the PM clinical told me that it is impossible to turn it off.

you need it

by DaisyGrammy - 2013-01-14 11:01:38

if you are using it 13% of the time..you NEED it! Pay the deductible and LIVE! I have had my pacer for 9 years and get my new one on Wednesday. I will have to pay nearly $2000 out of pocket but it's worth EVERY penny! I'm alive, I can function and the pacer is there for the few times I need it! Count your blessings not your pennies!

Tried this?

by golden_snitch - 2013-01-14 12:01:14

Hi there!

You could ask them to have it set at 40 or 50 just to see, if the pacing percentage decreases even more. Best case would be that it turns out that you are paced 0% then, which would mean that even in your sleep your heart rate does not longer drop below 40 bpm. Now, that would be a good additional info to have before deciding to have the pacemaker removed. With 13% pacing and considering that you are an athlete for whom slow heart rates are normal, I can understand that you wonder whether you still need pacer at all. I see this a little more easy going than Daisy. Doesn't happen often that pacemakers are no longer needed, but it's not unheard of. Especially in younger people the heart sometimes manages to help/repair itself.

I have no idea why the doctor and clinic totally refuse to turn it off. Not sure, maybe there is some kind of law/regulation on this? I mean, in the end when the battery is dead you can at least refuse to have the pacemaker replaced. But with just 13% pacing that will take quite a few years until the battery runs low.

I once had a test to determine whether I still needed the pacemaker: I had to stay inpatient for that day, they lowered the rate down to 30bpm - did not turn it off completely - and then monitored me. Turned out that I needed it desperately.

So, if I were you, I'd try to find out what happens during these 13% of pacing, how low the heart rate really gets. Maybe, if your cardio sees that it really doesn't drop below 40 or 50, he changes his mind about turning if off or removing it. And if it still drops below 40, you have assurance that you really need the pacemaker.

Hope this helps.
Good luck!
Inga

sad

by Happycamper - 2013-01-15 02:01:06

Bombay, I do agree with your assessment of your situation. People with active lifestyles do tend to run low; I think it would behoove physicians to remember this before putting a PM in some active people. Some athletes might need it, but most times they don't. If he doesn't agree to take mine out in six months, I will find another cardio for a second opinion. Not an opinion that will agree with mine but rather an objective point of view looking at all my test results and the how often I use the PM.

I just met with the surgeon who put it in. I told him I wanted it out because I didn't need it anymore and the expense was going to make us lose everything we had plus the shocking sensation I feel when I lay on my left side is driving me nuts.
He said he respectfully disagrees that he didn't want to remove it because he felt at some point I might need it then would have to put a new one in. But he did say this is America so if I wanted it removed, he would do it.
When I asked about turning it off to see what happens, he was in agreement with that BUT he said it can't be turned off. So I suggested a compromise: turn it down to its lowest setting; if I don't use it, he has to take it out. He said he had to think about it. He also said he had to talk to my hubby to see if he is in agreement; last I knew I was responsible for my own healthcare decisions...that really upset me. The doc did provide me with his home phone number but it's not likely my husband will call him; it is my decision not his...
It is apparent that he really doesn't want to remove it, and I do understand his point of view. However, since it is my body and my choice, I will most likely agree to have it turned all the way down then have it removed in six months whether he agrees or disagrees :)

It can be done...

by bombay gal - 2013-01-15 02:01:21

I have had my PM for 3 years, and had the implant for the same reason, low HR. On hind sight have found that due to an active lifestyle, the HR does drop low when resting to compensate.
I had my PM set at 40 low and 150 high...last year we saw I was barely using 1%.
When it started acting up and randomly pacing, and the techs could not figure out why it was doing it, they did turn it off till I saw my Cardiologist. He figured the leads were fractured and since it would be more risky to remove it, decided to keep it turned off.
Its been a month now and I am doing fine...I know I run the risk of it dropping low, but, I have had to deal with so many issues when i had it active, that I am willing to take that chance.
Like you I posted this a month ago to get inputs, and am going to get a second opinion as suggested.
Good luck with your PM

Taking it off..

by bombay gal - 2013-01-16 03:01:54

HappyCamer, not sure how long you have had it...but since mine has been in for 3years now, my cardio explained, that scartissue forms and to remove the PM is easy, but leaving the leads can/maybe lead to complications later on.
Unfortunately, my PM being defective, I will not be able to use it down the road even if I need it, but have still decided to keep it in, but turned off. As I dont trust them going in and messing up again.
But I do intend on getting a second opinion too, where do you live? I am from San diego, CA, do you know of any good Cardiologist here.
Good luck to you

My Thoughts

by Ausbill40 - 2013-01-17 01:01:57

Like you I am a fit person with resting heart rate of 40 BPM. I have been implanted with a dual chamber pacemaker because my heart rate, mainly when asleep was dropping to 20 BPM. I was getting pauses of 4.5 secs which my cardiologist said was getting too long & could cause sudden blackouts. This could be catastrophic if I was driving, crossing roads etc so he talked me into the implant for safety reasons as he explained.
I might add that I was asymptomatic. My pacemaker is set to a low rate of 30bpm & first readings after implant was I was pacing 27% of my sleep time. Yet to have my 6 week check up to see how much I am pacing. Operation was only done 8 days ago so early days yet.
Hope this helps in your decision.

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