Breathless - Update III

If you read previous posts you will be aware of my complications post PM implant so no point in going over old ground.

Anyway, four months later and after much door knocking, i finally got someone to listen to ME and stop referring / defaulting to tests and manuals etc. So, med professionals if any of you are reading this, for future reference please try HEARING what the patient has to say.

Long story short they made an adjustment (another one) and changed the PM mode. I'm now dual chamber pacing instead of single. My question to the pacemaker club now is; why wasn't it set that way in the first place. Why put two-chamber capability in me but only set it for single pacing. 

I told them countless times within a couple of weeks of the implant going in that something was 'not right' and it needed to be adjusted to suit me. But they constantly referred to the medtronic rep and my angiogram results. Annoyingly it was even hinted it might be 'in your head', go home and get used to the PM, 'it's working fine'.

Not once did I say that I thought the machine wasn't working correctly, all I ever said was I didn't think it was working correctly for ME!!! I was fit and active pre implant and until they went dual chamber pacing I felt I'd aged 20 years since the PM went in. Now I feel great.

Any thoughts on the dual / single chamber issue?

 

 

 


5 Comments

Tuning

by CyborgMike - 2020-06-14 17:19:12

Pacemakers are complicated devices with hundreds of settings. Your heart and your individual diagnosis is complicated. Put those two things together and docs almost never get it right on the first try. I had to go in a dozen times in the first six months to get mine tuned just right for me. 
min my experience, EPs start out settings very conservative. Low rates, low maxes, single pacing, etc  Then turn things up over time. It often takes a few weeks between settings to shake things out to know if things are better or worse. 
it doesn't surprise me they only had single lead pacing to start. If someone only needs pacing from the top and their heart has no AV blocking then that's a good place to be. Pacing the bottom (V) can lead to other heart issues if the % is high, so better to see if the heart can do it on its own first. 
my advice is to keep advocating for yourself. Schedule as many appts as you need to get it right, but also give it time between adjustments. And don't adjust too much in any one session. 

Unfortunately

by Theknotguy - 2020-06-14 17:28:23

Unfortunately you sometimes have to stand up for yourself and get in people's faces.  I ran into something similar only it was six years out.  I had a change to my exercise level and my pacemaker couldn't keep up with it.  Talked with my EP, had to take a series of tests.  Finally my cardiologist said it would only need an adjustment to my pacemaker but it was several weeks before I could get anything done.  Fortunately my EP and cardiologist knew they wouldn't  hear from me unless there was a legitimate problem.  But it was frustrating to have to keep going back and keep repeating myself.

I was volunteering at the hospital where I got my pacemaker.  Went back on the floor where I stayed.  I was surprised to find the nurses were only good at getting you back up and on your feet.  Anything beyond that they didn't really know.  Some of them didn't really care either.  It was always a surprise for them when I'd get into discussions about ongoing situations with my pacemaker.  It wasn't necessary for them to do their day-to-day job so they didn't know.  So if you get into a situation where you have to go back into the hospital for treatment don't assume they will be as knowledgeable as you about your pacemaker.  

Glad to hear you're doing OK otherwise.  
 

Question for You

by arentas80 - 2020-06-14 17:41:14

I only see you had Bradycardia. Did you have anything else? Have they done any long term monitoring like a Zio Patch or some kind of long term cardiac monitoring? Did they say why the second lead might be helping you? Was your heart beating out of sync? Just curious to see why no one has thought of this sooner. Anyhow we wish you the best and hope this is the fix!

Pacemaker modes

by Gemita - 2020-06-14 20:13:26

Paul do you know which mode you were actually in before your latest changes, for example were you in

? AAI (atrial demand pacing mode) before they switched you to

?  DDD (dual chamber pacing mode?) 

Do you happen to know the percentage time you paced

in the atrium ?  or
in the ventricle ? 

I was told for sinus node dysfunction patients with intact AV conduction, AAI mode was preferable to DDD mode.  Perhaps your doctors felt AAI mode was preferable for you too at the time of implant?  I was told AAI pacing ? offered better haemodynamic characteristics ? than DDD pacing.

Maybe you should ask your doctors why they had you in a different mode to dual chamber pacing mode.  It might be easier than us guessing why. They must have had a good reason, surely? 

I have dual chamber pacing but it is programmed for AAI mode (atrial pacing, atrial sensing), but automatically mode switches to DDD mode (dual chamber pacing) and paces the right ventricle alone when it detects a fast arrhythmia in the atrium which it doesn't want to track, if that makes sense.  I absolutely hate being in DDD mode and being paced in my right ventricle and cannot wait to go back to AAI pacing on cessation of any arrhythmia.

It sounds to me as though you have little confidence in your team and that is a bad sign.  Maybe it is time to find another cardiologist or electrophysiologist Paul, although I am delighted your present settings are helping.

Finally you ask "why put two chamber capability in me but only set it to single pacing"?  I would perhaps suggest your diagnosis at implant may not have been 100% certain (?bradycardia or heart block?) or you didn't need dual chamber support at the time of implant but to allow for any future changes in your condition, they may have decided to play safe and implant two leads which might be needed at some time in the future.  They would then be able to switch you instantly to dual chamber pacing at that time.  In the meantime perhaps they were hoping to avoid unnecessary right ventricle pacing which can cause problems for some of us, it certainly does for me

Thank you

by paulh - 2020-06-15 05:31:09

Hi all thank you for your responses, the support on here is fantastic.

In answer to a couple of the above, arentas80 and Gemita;

arentas80, there are two issues, firstly the Bradycardia and secondly an extra irregular beat happening above 120 bpm. Solution: PM implant for the BCardia and Bisop 2.5mg for the irregular/extra beat.

Unfortunately Gemita, I have only been able to speak to Techs when I reported back to hospital feeling unwell. As stated they have (up until a couple of days ago) referred only to test results/baseline settings/medtronic reps and didn't think outside the box (in my opinion). Or put it another way, actually listen to what I was telling them. I am able to describe in detail exactly what is happening with my heart and when. If it hadn't been for one nurse taking things a step up and talking with a cardiologist I'd still be in the same boat. Plus my insistence I had a Holter Monitor fitted so they could actually see the events I experience.

At my last visit the tech readjusted the PM to dual chamber pacing, she was doing this from handwritten notes given her by a cardiologist, yes you read that correctly. Step by step instructions as to what mode it would be set to. I was questioning the tech throughout and something you say above rings a bell. She stated that the PM was set on AAI mode and it wasn't sensing quickly enough when switching to DDD. They have now changed it so it is in dual-chamber mode constantly, it doesn't have to think about what its going to do, it just does it.

I now feel somewhat normal again.

 

 

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