Questioning need for a pacemaker

I have a question...
Do you ever wonder if you actually need a pacemaker. And . . . if you do have one has it made a difference? I first went to the Dr. because of sudden shortness of breath. They put me on the treadmill for what was supposed to be 15 minutes and I didn't even last 2 ninutes before the cardiologist said "I think we're done here". I said "that can't be good" and he replied it wasn't that my heart rate had slowed significantly and I might need a pacemaker. Well at 57 they implanted a pacemaker into my chest and then after having to go back in a week later so that they could reposition the left ventricle lead (Completely pulling it out and repositioning) I then also had multiple trips to the ER finally I ended up having to go to a major hospital in Seattle where I was diagnosed with pericarditis. The shortness of breath never did go away and I have a monitor that is supposed to send pacemaker readings every 3 months. The monitor is supposed to be near my bed but not on the floor. Well for the 3rd reading it had fallen onto the floor underneath my bed yet they said the reading was fine. SO… I'm wondering if it even really does anything so I unplugged the monitor before I left on a trip and didn't plug it back in and last Friday I get a phone message that they got the readings and everything looks great. What the Heck??? It wasn't even plugged in so now I'm wondering did I really need this stupid thing in the first place? Is it really doing anything. It sure has not made me feel any better.
I just wondered if ANY of you may have had a similar experience. Thanks for letting me vent. I now get to call to schedule my one year follow up and confront them regarding the Bogus reading. Sheesh! :(

6 Comments

My diagnosis

by stormynw - 2015-06-22 04:06:32

Sorry I forgot to mention that I have bradychardia. I've been amazed at how at least where I live there is a cardiologist who ONLY implants pacemakers and he is quite difficult to get a hold of and he does nothing but implants. Our ER has no idea what to do with pacemakers thus all the fruitless visits. I would tend to agree with non U.S. medical treatment in the monitoring. I talked to my hospital's Rythym Management today and she could not explain why a positive report was issued for a day that the monitor was unplugged. She was able to see it lost communication on May 30th yet sent out a report for June 17th??? She is going to look into it. I have my first one year appt next week but it's not even with the Dr it's with the Rythym Management Coordinator???
I will definitely look into seeing an Electrophysiologist. I know that my life is not at risk. I have had pretty much EVERY type of cardiac testing, scans, etc. the most recent being a Cardiac Catheter and the cardiologist said the my vessels looked like (and I quote) those of a teenager. However I do have one major vessel that is naturally smaller than average which might be causing some chest discomfort that I have. My main concern is the constant shortness of breath. Not asthma. They did an arterial blood draw and then they put me on 100% pure oxygen for 15 minutes and then did another arterial blood draw. My numbers should have risen from the original 400 to around 750-800 and they only went to 5-600. Anyway I go to the Pulmonary Dept at the University of Washington Hospital next week so Hopefully I will finally get some answers. :)

Need pacemaker; maybe not the monitor!

by SaraTB - 2015-06-22 04:06:52

first of all, do you have the name for your diagnosis that resulted in the PM? It will help us here understand. If your heart was stopping, it sounds like a PM was needed: you could pass out while driving, or holding a small child, or a boiling kettle - with disastrous results.

So, the shortness of breath: if that hasn't been resolved, I'd suggest you need the PM's programming looked at. I strongly recommend you see an Electrophysiologist: they are cardiologists who specialise in the electrical side of cardiology, and are far, far more knowledgable about PMs than regular cardiologists. Give them your history, and details of the shortness of breath, and ask for the programming to be reviewed. It may require another treadmill test (I had to have one to identify my issues).
You've had a rotten time, with the pericarditis, but don't let that distract you from the important back-up you now have in the PM.

Monitoring is always a lively topic at the PM Club: most US members have some form of monitoring. Most non US-resident members don't, beyond regular doctor's visits. I am a Brit, living in the US, and I got my doctor to admit that - in my case - monitoring wasn't going to tell him anything I wouldn't already have identified and called him about, and we agreed not to bother anymore (I refused to pay for a landline anymore - we only use mobiles).
Others like the reassurance of regular monitoring by the home device. Others hate the very thought of it (me). It depends on the sensitivity of your heart condition. If you have doubts about it, do a search on this website for other discussions. Then discuss it with your new EP.

Good luck - patients make the best advocates for themselves. Learn as much as you can about your PM!

keep looking

by knb123 - 2015-06-22 09:06:28

Welcome to our club and I commend you for continuing to seek answers to your concerns.

I say this often but I will say it again: a teaching hospital is the place to find answers to your health issues. The doctors there are likely to have seen "everything" (including and especially the oddball cases) and their collaborative style of treatment means you will get the treatment you need.

While you are at the UW Hospital, please report all that you have told us and keep repeating it until someone pays attention. They will have EPs on staff there and you definitely need a second opinion. The information about your home monitor is particularly troubling; I would bring all of that up, too. I sympathize with you about the apparently spotty care you have received so far. This isn't the way health care is supposed to be.

P.S. Can you get all your records and bring them with you?

Let us know how everything turns out.

p.s.

by knb123 - 2015-06-22 09:06:59

I had bradycardia, too, and was diagnosed with a complete heart block and a pulse rate of 37. You asked if you really needed a PM. Likely you do...but you also need better attention from doctors and explanations for the nonsense that has been going on (e.g., monitor).

Youthful Heart

by Artist - 2015-06-22 10:06:49

You say your heart looks good--blood vessels etc. I am 73 and also have been told that my heart structure looks very good. That does not mean that you do not need a PM. I have heart rhythm problems. My heart does not receive the impulses it needs to beat properly. I have Bradycardia, Afib and other rhythm problems. The PM is needed to counteract the very slow heart rate so they can use the medications needed to treat the Afib etc. When the atrium and ventricles are not in sync with each other, that can cause things like shortness of breath. My PM is pacing my very youthful looking heart at 78.8 % in the atrium and 2% in the ventricle, so it was very definitely needed. My long winded point is that a heart that looks good physically can still need a PM. Your PM settings probably need to be adjusted hopefully by someone that is well qualified and experienced.

Pacing

by stormynw - 2015-06-22 11:06:42

Initially my atrium was pacing 100% on it's own and the ventricular lead was pacing at 92% but I believe the last number I got was lower like maybe in the 80's? It will be interesting to see what the Rythym Management Coordinator has to say next Thursday. I will also be going to the University of Washington's Pulmonary Dept. Soooooo I am just hoping that someone there has had a patient with ALL of my symptoms and can figure this all out. But to feel no relief at all after having the pacemaker implanted, regardless of the pacing, has been beyond frustrating to say the least. I was on this website a lot last year right after I had my implant and it was quite helpful. but after the initial novelty wore off and with no relief at all there hasn't been much reason to be on here. I am glad though that this website exists. So thank you all for your input and your comments. :)
Regards,
Dami

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