Questions from pacer-to-be

If there is anyone who got a PM while asymptomatic could they let me know how they got on?

I am meeting my cardiologist next week to finally plan getting a PM. I have complete congenital heart block and I am 34. Thankfully I have no symptoms. Seeing as I am asymptomatic I dont expect the pm to make me feel better, but will it slow me down? and for how long? I can only imagine that its a bizarre sensaton...can you feel it ticking away. (my heart rate is just below 40bpm so I imagine it will be going 100%)?

Are there any long term effects to having a pacemaker?

Also, How long would you expect that I will be out of action? I know the docs say take it easy for 2 weeks, but most of the people getting PM probably need time to recover from the underlying condition so I am hoping it will be a bit less. Or is this naieve?

Finally, did any of you get a say in what make or model PM you got. Or would this be dictated by the doctors. I am concerned that I read about alleged backhanders etc from manufacturers to docs?

Thanks
Julie

8 Comments

Getting a Pacemakerr

by SMITTY - 2008-01-15 01:01:27

Hi Julie,

The following is too long I know, but your questions attracted the attention of an old geezer that is confined to his house to today because he was a bad boy yesterday. All I did was make the mistake of talking back to my wife. You would think that after 59 years I’d know better.

"If there is anyone who got a PM while asymptomatic could they let me know how they got on?" I guess you could say I was asymptomatic. I had a heart rate of around 60, which is what it had been for 40+ years as I can recall. I had no problems from that, and then one day I had to go to the ER because of SOB - I've had on going problems from heart disease since '82. While in the hospital I had a couple of real short runs of V-Fib and my PCP thought I should be evaluated for a defibrillator since those short runs could be a harbinger of things to come. I went for the defib evaluation and came out with a dual lead pacemaker. I' dead serious, I was never told I needed a PM. Anyway, the setting on it was low 80 and high 120. The diagnosis was sinus node dysfunction.

I was back to normal living on the second day, except of course I was careful of arm motion for a couple of weeks. I was driving on the third day, again being careful to pad between the seat belt and the PM incision site with a big soft towel. Within a week to 10 days all soreness at the incision site was gone. At the most I took a half-dozen ibuprofen for discomfort during that time.

It took me a couple of weeks to even notice my heart rate was now 80 in place of the 60 I had lived with so many years. When I'm in bed I can fold my ear over and get an internal stethoscope, as I'm sure every one can. But since the onset of my heart problems last century I would frequently do this to see how regular my rhythm was as I've spent many days when it was not regular. One of those nights after I got my PM I noticed the much faster HR and that began to bug me. Bugged me to the point that I more or less demanded that I have a lower low setting, and they reset it to 70. That was nearer normal for me and didn't get my attention thereafter. I tell all this because I went through the various settings with my PM and I never felt my PM at any time. That is not to say I had no problems, but my problems were from the location of a lead letting me get shocked, not a problem with the PM per se.

I'll inject right here, you should not feel your PM assisting your heart. When you get the PM it will come with factory settings that have been changed based on what he doctors know about your needs. However, if you do feel it then it needs to be "fine tuned." A PM has hundreds and probably thousands of possible setting combinations and sometimes it takes a while to find the ones best for you as for the most part it is trial and error.

Are there any long term effects to having a pacemaker? There will be long term effects, such as you will probably not be an acceptable candidate to some insurance companies for insurance. There will be some jobs for which you will not be accepted, etc... But physically, there should be no long term effects. A couple of other long term effects are that you will probably have a pacemaker the remainder of your life and that it will have to replaced 5 to 15 years. Replacement is about the same and the initial implant.

"Did any of you get a say in what make or model PM you got." I got a Medtronic because that is what the EP wanted to put in. If he had asked me for a choice I would have had to ask what the choices are. But all this caught me totally off guard and I had no time to do any research. As for a recommendation for you, of course, based on my experience, I would recommend a Medtronic. My second choice would be St. Jude. My last choice, and it would have to be a life or death situation for me would be Guidant. All pacemakers do the same job. A good analogy is compare a PM to a PC. They all do pretty much the same thing, just slightly differently.

As for kickbacks, personally I think it happens more often that we would like to believe. But since all PM, as I said do pretty much the same thing, I would not let that be a concern to me. You must have faith and confidence in your doctor that he will see that you get what is best for you and not put whatever he may receive ahead of that.

Good luck,

I went in to get my throat checked!

by dward - 2008-01-15 02:01:06

f there is anyone who got a PM while asymptomatic?

That was me. Every time I performed and sang, I would get this hoarseness shortly afterward. They tested EVERYTHING and found absolutely nothing wrong with my throat. Other than the throat thing (only after performing) I was fine.
Long story short - Turns out I was actually feeling Premature Ventricular Contractions. These PVCs are not a problem, I just FEEL them.

Just to be safe (standard procedure as they say...) they hooked me to a Holter Monitor for 24 hours and viola! They told me I needed a Pacemaker!!!

I had no symptoms whatsoever. Turns out my problem is typically when I sleep. I get a very low heart rate with some feaky long pauses.

Mine doesn't slow me down whatsoever.

I DID feel it pacing at first (which TOTALLY freaked me out! It WAS NOT PAINFUL, just felt odd) but once they did some "adjusting" I don't notice it at all.

I do FEEL the actual PM a little at times (just beneath my left collarbone) when I put on my guitar strap or seatbelt.

I took it easy for 6 weeks (no golf, swimming, heavey lifting) because they say it takes that long for your body to heal around the leads.

Long-term effects: obviously, the battery will need replacing.

A say in make and model - No. As Smitty says, I don't know that I could do enough research to make that call. I have a hard enough time deciding on what car to buy.

As far as kickbacks - That's the great thing about sites like this. If there were an exceptional model or a terrible model... we'd likely know about it.

As for how often your PM will be "working" - that will depend entirely on your situation. You will learn very quickly how often it paces though because it keeps track and you should be able to get that information from your PM Tech or Doctor.

Cheers!
D. Ward

What Kind of Pacemaker?

by Meadowlark - 2008-01-15 04:01:24

First, my post-PM surgery experience was easy, mainly paying attention to not raising my arm and not lifting anything for a few weeks (@4 weeks). I had my surgery on Thursday morning and back to work (office work) the next Tuesday....for me, my recovery went smoothly.

Second, choice of Pacemaker question...my doctor uses Medtronic, St. Jude, and Guidant. When I asked which one he will use on me he said I could pick the one I wanted. So, I chose St. Jude. The reason I chose St. Jude? I work for Abbott Vascular (the stent manufacturer), formerly Guidant (stent and pacemaker manufacturer) so I asked my colleagues, among them design engineers, for their recommendation. St. Jude won hands down.

So far, I am happy and confident with my St. Jude PM, but one cannot predict future recalls by any of the manufacturers...they all have their design and manufacturing challenges!!! I know....I work in the industry :-)

Hope this is useful.....

On the other hand...

by dward - 2008-01-15 05:01:50

Geez, If I were an engineer at a firm that made pacemakers and I had to recommend to a collegue to get a brand other than ours... not to sure I would be too proud of that. If they weren't so great at making them, not sure I would too much weight in their opinion.

Sorry, but that just seems whack to me.
(Hopefully, I never need a stent from Abbott Vascular!!)

Also - how many of those people actually HAVE one of these PMs? Making is one thing - living with it inside you is another.

Pacemakers (all brands) have come a long way and the percentage of major complications is extremely low.
I've seen more people who have problems with hip replacements.

Hmmm...

by Meadowlark - 2008-01-15 07:01:02

Abbott Vascular is no longer a part of Guidant and NEVER manufactured PMs or ICDs at the stent manufacturing site; the recommendation came almost two years after the Abbott stent business separated from Guidant and after the recent Guidant PM recall. Abbott Labs purchased the stent business but NOT the pacemaker/ICD business from Guidant (Boston Scientific). Abbott Vascular is a different facility, with different engineers for stents but lots of knowledge available not only about Guidant but all industry product offerings.

Don't be fooled in this industry re:your comment about "never need a stent from Abbott Vascular". Abbott Vascular makes stents for other manufacturers as well as catheters and is considered premier in the stent industry.







Info

by GN - 2008-01-15 10:01:58

Hey Julie. I can't comment on your actual condition but I can give you an insight into the recovery and my personal feeling. I'm now 4 days into my PM life. I'm 29, have 3rd degree AV block and had a few but not many serious symptoms so the cardiologist decided to be on the safe side and put in a dual chamber PM (DDD). To be honest I never decided to ask what make and model as I'm really no expert and purely rely on the specialist knowing his area. They put in a Medtronic (still need to find out which model). I stayed in overnight and went home early in the morning. Now, with resting and recovery, with me being 4 days in I am feeling 100% better than the first. The first being, tired, sore, emotional but in good spirits. This is purely the way my body and mind are dealing with it. I found with me being a very sensitive soul ;o) I found it quite difficult to comprehend having a PM at this age. Looking back, I really had nothing to worry about. I would say depending on your personal circumstances and home life (young children?) you should be up and running at the 2 week stage. How am I feeling now? I have up and down days and just need to understand it’s in there for a reason and not to fret too much. You'll see with others on this forum that life pretty much returns to normal and with so many amazingly supportive people its a great benefit to keep talking. So, I wish you all the best and hope you've gained a little more insight into how it feels 4 days in :o) - Take Care
Gary

Comments for pacer-to-be

by Vai - 2008-01-15 11:01:30

Welcome to the club!
Only your doctor could decide whether you need a PM and the make & model that is appropriate to your condition. Given the range of what is available on the market, I doubt you would learn enough about PM and choices in a short while to influence the decision. In my case, the cardio referred me to a EP to make the decision to implant the PM and decide on the make & model.

You are right that being asymptomatic the PM would likely not make any significant difference in how you feel. No, you will not feel it tick in your body. In fact you will not even feel it at all. The PM will not slow you down.

Recovery from the surgery is about 6 weeks. Check out the plentiful information posted on this site. There are guidelines on what you can and cannot do during recovery. Take heed of the many lessons shared and learned on this site. It is very helpful info. The main idea in recovery is to keep the wound clean & allow some 2-3 weeks for the surgical incision to heal AND allow some 6-8 weeks for the PM leads to be entrenched in the heart wall. You don't want a pulled lead requiring additional surgery to fix.

You mentioned about the pacing percentage - this depends on the PM setting and the natural rythmn of your heart. 4 weeks after the PM you will get a PM check-up and the doc could tell you of the percentage of your heart being paced. In my case, the EP estimate of pacing was about 25% based on calculations from holter (24 hour external device monitor) readings but after the PM the pacing percentage is a stable 93% over last 18 months.

Lastly, keep asking the questions on this site. You have friends here to share their experiences.

Wish you the best.

Thanks

by juliek - 2008-01-17 06:01:22

Thanks to everyone who replied to my post.
Its much appreciated.
Im meeting my cardiologist next thursday and feel alot more reassured.
Thanks
Julie

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You have a high-tech ticker.

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.