Difficulty with Stairs

Good for you!

by Persephone - 2023-03-04 14:58:51

Glad you're feeling better. It is challenging to feel like you're being button-holed into a settings situation because "AV-block-only presents a certain way and doesn't require those adjustments...etc." Similar situation on my part. I guess if your techs get some education from you it helps others being treated, so there is a bigger picture, but good for you for persevering and advocating for yourself.

Good for you

by Gotrhythm - 2023-03-04 15:12:39

So proud of you for persisting until you were listened to! And glad your pacemaker is now doing more of what it actually can do to support your best quality of life.

I don't have AV block myself, so I can't offer experience in getting the settings optimal. But I do understand from what I've read here that it can be tricky to program RR around it. In my opinion that doesn't mean you don't try RR. It means you keep at it until you get it right.

Sometimes the only way to know if settings are right for your situation is to try them. For instance, I have it on the authority of my pacemaker tech that my settings are so unusual for someone in my situation as to look impossible. Anyone who didn't know would assume some other tech had made a big mistake.

That's great!

by AgentX86 - 2023-03-04 17:16:55

I've always had problems with stairs.  I've had my rate response set as fast as it can be and it doesn't help. I wish I could try pushing a change like that, unfortunatlely AV delay isn't going to help (not applicable). My cardiologist and PM tech say that there is nothing they can do and that it's "normal".

Feeling better with the new settings

by Rch - 2023-03-05 18:10:30

I wonder what they really saw on the stress test on the HR and BP responses that prompted them to shorten the AV delay. That does reduce the cycle length which in turn automatically raises the tracking rate. My humble opinion is that you test out the new settings for at least 4-6 weeks and if you really feel good, just stay with it. I wouldn't rock the boat. You might mention about the RR to the device tech at your next scheduled meeting!

Interestingly, I had my meeting with the Device clinic yesterday, and I asked her to turn off my Accelerometer to passive!! I have no CI  nor am I  pm-dependent ( yet). So far, I haven't seen any adverse effects on climbing stairs or uphill! Upon return home, I retrieved a 71-page pacemaker report. Too daughting to understand and the only reprogramming intervention I saw was Accelerometer to passive per patient request!!!😀

Stress Test Results that led to better settings

by Lisa Michelle - 2023-03-06 12:45:49

Thank you for all of your responses. It's always so helpful to hear different experiences and insights. I don't always get to reply to everyone but I do read all the messages. I want to reply to the question about the stress test I did. So, just to summarize, I have a complete AV block, PM dependent. I felt sure my settings weren't right because like clock work, I would have to stop in the exact same places when I walked up stairs or certain pathways with inclines. Normally, like anyone, before I had the AV block, I could improve my physical condition by walking more. I work as a tour guide, so I know those routes. I know how I would feel if I didn't work for a while and how I would improve if I walked those same stairs every day. (I have to say, I am so grateful I stopped fainting which had been happening for about 6 months post-Covid. It truly saved my life and I am very grateful.)  But I was starting to think I would have to get a new job which is not so easy after years of learning and investment in my current job. I also noticed that, as I mentioned, my heart was not coming through for me, but it was perfectly predictable, not like one day was like this and another was like that. So I felt sure it was a settings problem. I kept going back and the technicians said everything was set right. So I did a stress test. I did about 5 minutes on the treadmill and I had to stop. My blood pressure was normal but my heart rate never went above 117 and most of the time it was only 90, even when running uphill on the treadmill. No wonder I was having problems. The next day, they told me to come in and changed the settings. It made a very big difference immediately. It's frustrating that I went in 3 times (over 4 months) with complaints and they told me the settings were fine. Only the stress test made the difference. The technician who did the stress test was a bit "stressed" out because she's not used to seeing a PM on a stress test, she yelled for someone to come check (who assured her that's how a PM looks on a stress test) but it was worth it. I hope as someone mentioned that I will help others in the same hospital who will have better-informed technicians for next time. I think I will keep the settings as they are, and not press for RR even though my doctor suggested it. The tech people said no and I am feeling good, so I will leave it for now. But will see. When I kept going back the technician told me that checking the PM with their system wears down the battery and I shouldn't come back so much. Is that true?

Device checks wear down battery

by Penguin - 2023-03-08 15:41:35

I've not heard that one before and I had very frequent checks at one point in my pacing history! Nobody mentioned it to me and my battery lasted far longer than most.  

It sounds like your techs are a bit busy perhaps? It's tough on everyone when you have to keep going back to get an issue sorted.  You feel guilty for pestering them and they feel doubted and perhaps a little miffed that they can't sort it out satisfactorily for you.  I know the feeling well! 

At the end of the day your persistence has resulted in a positive change in settings.  Once you're feeling well and able to function normally they won't see you so much because you will be able to get on with life. That's a win win in my book. 

I'd try to forget that comment and not dwell on it.  You're feeling better and that's what matters most. 

Well done! 

Good to know about the battery

by Lisa Michelle - 2023-03-08 15:55:40

Good points about the tech people. I think you've described the dynamic there well. The funny thing is now that we went through all those uncomfortable visits, and they eventually saw I had important feedback for them, I started to get special attention. So I guess it's all for the best. I'm happy to hear the tech checkups don't wear down the battery. That was a disturbing thought. 

Opinions

by piglet22 - 2023-03-14 08:05:35

It's human nature for individuals to have different opinions and clinicians in cardiology are no different.

It's the same with conditions. As patients we are all individual as well.

I spent a lot of time solving industrial problems in situations where you had nothing or anyone to fall back on.

I never gave up on a problem, though.

My approach was the scatter gun approach.

Throw solutions at the problem until something stuck. That buys you time.

One by one, take the solutions away until you identify the one that works.

It's different though if you have to pester someone else to look at the problem in what in the UK at least is becoming a very stressed health service.