Complications???

Aside from scar sensitivity and my PM shifting and hitting my collar bone, I actually feel WORSE overall since getting my PM.

I have a congenital AV block that wasn't detected until I was 19, and I didn't get my PM until I was almost 35. I was always told I would have more energy and stamina if I were to get a PM... NOT SO! I used to be active and enjoyed going out dancing, swimming, etc. Now I tire going up the stairs.

Also, my internal body temp seems to have gone up. I never used to break a sweat, even on the dance floor for hours at a time. Now any exertion makes me so hot I have to shower after changing my bed sheets! Even sitting still I sometimes feel like I have a fever and I'm still hot even when those around me are freezing.

I noticed these changes almost immediately and 8 years later, I still haven't adjusted to them. I have basically stopped exercising because I'm so uncomfortable, which has compounded the problem since now I'm also out of shape.

Has anyone else experienced same or similar?

Honestly, If I had it to do over again, I wouldn't get it.

4 Comments

Shouldn't be

by ElectricFrank - 2012-09-12 11:09:18

Something isn't right. Hears a few thought on it.
1. What precipitated your finally have the pacemaker implanted? Sometimes a new condition develops that requires a pacemaker. It would have affected your energy etc. even if you hadn't received the pacer.
2. Normally I would consider a systemic infection that occurred during the implant, but it's been a long time for that to be true.
3. More likely it has to do with the programming of the pacer. We have had people on this site who have put up with discomfort for years due to poor adjustment. If your issue is solely AV block then the results should have been very favorable. There are a couple of adjustments that are commonly a problem with AV block. One is inappropriate use of a function called
Rate Response. I had this early on with mine and it caused problems. The other is the Upper Tracking Rate that limits how fast the pacer is allowed to pace your heart. I also had a problem with this one.
Both of these settings are commonly a problem with younger, active persons.

The difficult part is getting them changed. Usually the tech or doctor will insist that there is no problem with your pacer or settings. They claim that having irregular beats during exercise is no problem. In my case it took a lot of pressure on my part to get the settings changed. By the way I've had mine since 2004 and even at 82 yrs am very active.

One last suggestion. At your next checkup, request (or demand if necessary) a copy of the Initial Interrogation Report and the Final Report. There are several of us here that understand how to read them. If you would rather drop me a private message.

frank

Agree with Frank

by PacerRep - 2012-09-13 12:09:20

Sounds like a programming issue, Your AV delay could be set way to short causing your atrium and ventricle to compete causing a condition known as pacemaker syndrome, where you feel terrible. from the symptoms you suggested I can think of a dozen or so things that need to be looked at. Get the reports like frank said.

Language issues

by goguryo - 2012-09-16 11:09:56

Hello,
I'm an american living in Korea and had to get a pacemaker 4 days ago Medtronic Advisa DDDR.
Normally, i'm a healthy 43 year old that has been competing in Ironman and ultramarathons. I went in with trouble breathing when climbing a few stairs and lightheadedness when getting up. (complicating factors - not exercising the last couple months due to my wife's pregnancy and not sleeping more than 3hours a night for 6 weeks since the twins were born.) That said, i was diagnosed with a third degree AV block which after getting a temp pm and doing lots of tests became intermittent 1st and 3rd degree (2-4 incidents a day- some only a few seconds).
Docs in Korea usually don't get asked questions, but i got my computer delivered and started asking (not always appreciated)... the answers were often unclear as my language ability is short of fluent and their ability in english is minimal.
that said, I'm having trouble dealing with them on adjustments to settings -
1. I have had Athlete's Heart with resting heart rate of 36-45 all my life, yet they are setting the low end to 50 (which i believe may cause many unnecessary shocks)
2. the Upper Tracking Rate is set at a mere 150 when I normally get it up above 180
3. it is doing unnecessary atrium stimulation that they have no explanation for at 70 or so bpm (is this caused by the Rate Response function?)


questions:
how do i understand my AV delay?
Medtronic Advisa is not FDA approved in the US yet, so the company will not answer any questions on it (and their rep here only speaks Korean) so how do i get better information about adjusting settings?

additionally

by goguryo - 2012-09-16 12:09:04

To add to my statement above

4. doc doesn't want to adjust my high or low end - i guess he's never met athletes with PMs before. So what can i say to convince him or should i - for some reason i don't understand - not try?
5. also having some issues with stimulation of my intercostal muscles whenever i try to lie down (intense thumping) that goes away the second i get up, turn on my side, or even take in a deep breath. (worried about the leads here.)
6. finally went for a long walk today and had the same trouble with walking up stairs or uphill that i had before the surgery - that's scary!

anyway, would appreciate any feedback from you other bionics (or bionic reps) out there...

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My pacemaker is the best thing that every happened to me, had I not got it I would not be here today.