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Well I went to the reschedule of my office cancelled appointment that I referred to in a previous message. It was amiable but contentious,,, I described my feelings when running. That is first 15+ min Normally Ok but then breathless and difficult to continue without significant slow down, my HR monitor shows a drop in HR to 100-120 but perceived effort is 4 to 5 on a 1 to 5 scale. Show stated that is the same complaint I have had the last 3 visits (duh)
I ask for increase in upper rate from 150 to 170 after much gnashing and her visiting with someone else outside my room, agreed to raise to 160 and stated she had to lower my AV paced rate from 300 to 250ms. I said good why not the 170 upper she said she would have to lower my paced rate to 200 which would cause me to be paced significantly more in the ventricles and that was not desirable. Although I wasn't sure my paced ventricle % would increase because of this I settled for the upper 160 rate with the lowered paced rate of 250. Her thoughts on the sensed delay timing was that my atrial would beat and if my ventricular beat did not occur within the 250 ms then the pacer would intervene. I found out I'm paced 99% in my atrial and 6% in the ventricular. My rate optimization is on set at 4 ADL and 4 exertion response ADLR % 4.0 med/low,,, 30 sec activity acceleration,, high rate % 0.5%
I came home went for a quick 40 min run due to coming snow storm. It felt better during 2nd half but I did notice I was dizzy for app 10 min after run and unbalanced. Due to the snow/ice I have only been able to run on treadmill for 40 min and was only slightly dizzy for a couple min but the effort was less. I have noticed ever since the adjustment 5 days ago I keep having very noticeable hard heart beats several times a day, I can even see them when I raise my shirt and they are on the low side of breast area right at the rib cage junction. It feels like it does when they do the test interrogation,,, hopeful that after some regular running things will settle down,, they did tell me when I started asking some questions that they thought I was getting into too technical details and areas and I needed to be careful reading too much into all the details. She also told me several times that the PM would not slow me down that's just not what a PM does, it just helps ????
Comments please.
She also told me they have adjusted me and checked me more than anybody they have ever had I apologized and said I was just trying to get to where I could run normally without having to concentrate so hard on pace, breathing and pushing effort just to finish, pre PM I just went out and ran most of the time and put my brain on auto pilot,,, I starting to feel like I'm being unreasonable ??


3 Comments

How long have you had the PM

by Theknotguy - 2013-12-10 11:12:02

How long have you had the PM?

Pre PM I was doing four miles in the morning and over 2 miles in the afternoon. Rate was about 3 MPH. (I had to give up running because of my heart, but I was still walking.) Now with the PM I can do about 1 1/2 miles with a rate of 3 MPH and a heart rate of 115, but that's about it. I'm in rehab now and am starting to get better. PM was implanted after a traumatic event just over 60 days ago.

I'm not upset about the situation just realize that I have to give myself time to work up to the new level. So part of the holdback is my body adjusting to the new reality. Is that the situation for you? With the new meds and the PM my body needs time to adjust to the new reality. Is it the same for you?

I'm not a doctor so this isn't a medical diagnosis. The question in my mind is if you've given your body enough time to adjust to the new reality?

Thknotguy

Hi

by jeanlancour - 2013-12-10 11:12:23

You are not being unreasonable, who is she to tell you that you don't need to know technical details. You have a right to know anything there is to know about your PM and the way it acts in your body. Maybe she only takes care of people that have no interest in how or way their PM works. Fine for them, I'm 70 years old and due to other things can not be active, I still want my PM to do the best for me. I ask all kinds of questions, have had it tweaked many times, have lost a tech because she wouldn't listen, make sure I have a copy of the read out. Don't give up. it is your right to know, and have your PM work right for you and what you do. Jean

Expectations

by golden_snitch - 2013-12-11 02:12:08

Hi!

I don't think you are getting into too technical details. But I am definitely beginning to think that you are expecting too much of a simple accelerometer sensor for rate response. Really, this is going to get you nowhere close to the rate response a fully functioning sinus node provides. Pacemakers' rate response is okay, and definitely a lot better today than it was like 20 years ago, but it still does not mimic a sinus node perfectly.

My impression is that you want to be able to run like you did before your heart problems started. I'm sorry, but if you totally rely on the pacemaker's rate response, this is very unlikely to happen. Especially an accelerometer has its limitations. It usually responds very well and quickly when you start exercising, but it sometimes has problems with long periods of activity/endurance training. You can continue to tweak settings, but you should be aware that you'll soon reach the point where all the tweaking doesn't help any longer.

So, having said all that, I think you should probably lower your expectations a bit. If you are able to run - without a pause - for 40 minutes that's already pretty good for someone who relies on the pacemaker's rate response. Also, as I said before, your Medtronic accelerometer is automatically adjusting itself everyday, it has a kind of self optimization feature. But you need to give it time to figure you out. If you keep changing settings all the time, it will start to learn from the scratch again and again.

Best wishes

Inga (who's been in the rate response "business" from a patient's perspective for 14 years)

You know you're wired when...

You make store alarms beep.

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