coincidence ? ? ?

Hi,
Had my first PM check on Friday & everything went very well.The only (slight) concern was with my incision area which is still sore & red but they say it has been sewn too tightly but should sort itself out soon.
They seemed happy about the PM's performance & said it was kicking in 59% of the time & l dont go back for 12mths now. So l left the hospital feeling very pleased with myself & my PM. But since then l have noticed almost constant palpitations,l am in permanent Afib so that does happen with me but not usually as strong as they are now,also more out of breath than usual but l do have a bit of a cold which could be to blame for that. What l was wondering is do you think they could have altered the settings? but if they had surely they would say? or is it just coincidence?
Would appreciate your thoughts, thanks Sue X

5 Comments

Hi Sue

by sugar - 2011-06-12 01:06:29

I hate when they make changes and don't bother to mention it so call and ask if they even made a very slight change.
I am on Inderol for my almost continuous a-fib and I many months ago had them lower my 65 bpm to 60 bpm. The slight change didn't seem to do much for the lack of sleep so I take meds for that too.
So far the pm checks have never been printed out for me at all and I am alittle ticked when they tell me I don't need them - they do give me the letter explaining what they are thinking. That is what I am working on.
I also know that sometimes an extra strength aspirin or something like that would help me slow down the a-fib when I had nothing else to take. Don't know why that worked but it did.
Good luck.
Patty

sue uk

by climber - 2011-06-12 01:06:32

I've had palps since my PM was fitted last October for av block. I think it's my PM that makes it happen, but the PM tech say's all's well with the PM. I go for my so called 6 month PM check on the 14th June. I've a few questions to ask the PM tech. I like the idea mentioned by smitty, of asking for a print-out. We know our own bodies, and we know when some things not right, but will the Docs/techs listen? So far the answer has been 'no' for me.

Gary uk

thanks

by sue uk - 2011-06-12 01:06:45

Appreciate your comments,what has really annoyed me is why change it when it was feeling good,l could understand if l was complaining but l told them apart from my incision still being sore l had no probs' at all with the actual PM. Patty l will leave it a day or two and if no better will see if l can get some answers from docs like you suggest.
Gary l wish you well on Tuesday,let me know how you get on,where abouts are you? l am in Shropshire but have to go to Stoke for treatment,make sure you ask all those questions maybe write them down cos when they asked if l had any l couldnt think of one,until l left the
hospital and then they came flooding back !!!
Smitty, 5yrs!!!!! that is scary must have been a nightmare not having anyone take notice of you.l am glad you got sorted eventually but 5yrs!!!! That is what worries me now cos l have been back at work for a couple of weeks (and enjoying it) l am going to struggle if l feel like l do today also 12mths until my next check seems a long wait to tell them,just have to hope its a temporary blip & l will feel better tomorrow! Sue X

Yep, 5 Years

by SMITTY - 2011-06-12 06:06:05

Hi Sue,

Yes, it took me 5 years to get the problem solved, but after about 2.5 yrs I had enough and told the EP that implanted it to turn it off. He objected and I didn't know what may happen but those shocks were daily and several times a day and had taken over our lives and I had enough, so after a heated argfuement he complied with my request. That dr left the PM clinic and I was asked to see the new one who convinced me I needed the PM restarted. After a few days the shocks restarted and the new EP was the one that determined what the problem was. So, yes it was five years, but not continuously. I had just about reached the point that I was ready to take out my pocket knife and perform pacemaker removal surgery. No, I was smarter than that, but it had reached the unbearable stage.

That experience is why I tell people that if you have a PM giving you a problem and you can't get the Dr attention it is time to use the stubborn mule treatment. In case you don't know what that is, on the farm if we had a mule that would not obey requests we would pick up a good sized limb and hit him right between the eyes. We would then have his attention and it was surprising how well they would mind there after.

Now before someone wants to have me arrested for cruelty to animals, no I never did that. I did grow up in the cotton farming country of Mississippi in the 30s and 40s, where mules were used for plowing. That was the old wives tale circulated in those days about how to handle a stubborn mule. I'll admit I have seen some Dr I would like to use that treatment on.

Smitty

Concidence - Maybe

by SMITTY - 2011-06-12 12:06:01

Hi Sue UK,



Yes they could have made changes and not tell you. Not that I know whether the changes could or could not cause the change in feelings you are experiencing.

There are more than 1,000 possible settings combination for a pacemaker. A technician can easily decide "I'll tweak this one a little and it should make things better, or that is the way they taught me it should be." I think the problem is they can see what effects the changes make in you PM operation as they are looking at what looks like a display of an EKG when they make changes. It has long been my contention that what they see when these changes are made may not be representative of what I feel after I return to my normal routine.

My introduction to this possibility came when my PM was three weeks old. Although I had no problems I had to go in for the first checkup and after a few minutes of them looking and doing whatever my PM was pronounced good to go and I left. No more than 15 minutes later, as we walked to the car, I got what I thought was an electrical shock. It happened on once or twice and I didn't associate it with my PM at the time. Over the next 24 hours I had enough of the shocks that I knew the PM had to be the source so I got an appointment for a recheck. I got the same tech and explained what I thought was going on. She checked out the PM and of course told me "your PM is working fine and it is not your PM that is causing your problem." I was to hear that more than a hundred times of the next 5 years that it took for me to get the problem solved. What was happening was the PM impulse to the ventricle was also "stimulating" the phrenic nerve. After I got that corrected there was no more problem.

That was also about the time I started asking for copies of the printout of my PM checkup report. Since then I have gotten a copy of all checkup reports just for comparison purposes. And I know for a fact that they will make changes without telling me because I can see the change in the numbers on the printouts. Also, when a change is made it is identified with >.

Long story I know, but back to my first sentence. Yes they can make changes and they probably will not tell you. My suggestion is if possible get a copy of the PM checkup printout so that you can look for changes in the settings should you notice something different in the way you feel.

Good luck,

Smitty

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