Second opinion on pacemaker decision

Ventricular pacing percentage and settings

by crustyg - 2020-11-18 17:46:18

In one sense you are correct:if the PM is set to give you a lower rate limit of 60BPM then that's one beat every 1000ms, and it might well be set to a maximum A=>V delay of 400ms, so it will pace you most of the time.

Mind you, a *really* long A=>V delay is the hallmark of 'Long Q-T syndrome' which is a recognised cause of SCD.  Nowadays there are gene markers of this but back in the day it was a common probable diagnosis that could not be proven post mortem.

I think you're looking at the wrong end of the telescope.  Apart from the pain/discomfort of the pocket and skin incision, it's uncommon for your PM to make you feel worse if all you had was HB.  So, either that diagnosis was wrong (and that's relatively easy to verify), OR you had a treatable cause of HB that doesn't need a PM (e.g. Lyme myocarditis), OR there's another factor (cardiac tamponade because they've put the lead through the heart muscle), OR something else.

In your shoes I would seek an urgent review with my EP-doc.  Tell him/her what you feel, what symptoms you have and let their medical expertise help you to get/feel better,

second thoughts

by Tracey_E - 2020-11-18 17:54:02

Know that they don't just give out pacers for no reason. You mentioned before that your rate was in the 30's, that's not even close to borderline. Under 60 is abnormal, 40's is pretty bad, 30's is downright dangerous. The heart can move in and out of block, sometimes beating very slowly, sometimes beating normally, or close to normal. With heart block it's not if we need paced, it's simply when. It does not get better, it can stay the same or (more likely) get worse. Rate in the 30's, even if it didn't stay that way, means now, no further monitoring needed. It's great that your rate came back up to a more normal number on its own, but the fact that it can dip to 30 is all they needed to see. 

It doesn't matter if there is a delay in the signal or no signal, either way your electrical system is not working properly. That delay can drag out a little longer with each beat, that's not good either. If the ventricles don't beat immediately after the atria, it's appropriate to pace that beat. 

How you feel now is not how you are going to feel when you are fully healed and the pacer is fine tuned for your needs. Not feeling great now means your body is recovering, possibly your settings need adjusted. It doesn't mean you don't need it. You can ask the cardiologist questions without ruining a relationship. Be nice and don't make accusations, but questions are ok. I've found that when they realize I want to understand, they are very forthcoming with information. 

The pacer always gives your heart a chance to beat on its own before pacing. It only paces when the ventricles don't beat fast enough after the atria beats. They can adjust this setting, make it a longer or shorter delay. Sometimes they try to make it longer so it paces less, sometimes it's better to have it shorter because we feel better. This is one of the things they fine tune as we heal. 

How are you feeling worse?

Have you had your first check where they adjust the settings?

Fair points

by quikjraw - 2020-11-19 06:16:09

It is such a big help being able to discuss my thoughts with people who clearly have a lot more experience in this field and are willing to take time to comment so thank you for your responses.

crustyg

I understood the timings of 400ms to be associated with the time from P wave to the QRS feature of the ECG. I read this to be classified as a grade 1 block and in the absence of any thing else is not treated. Clearly I have other features that meant further action is required.

When you mentioned whether my diagnosis would be easy to verify is this now possible with a pacemaker fitted?

Its difficult for me to asertain what I am feeling is linked to simple recovery and what is associated with the pacemaker. For the last few days I have had what I can only describe as heartburn in the centre of my chest and feeling very fatigued.

I will speak to the hospital about these sysmptoms but expect they will not bring forward my first follow up appointment which is 3 months away due to COVID.

Tracey_E

You are exactly right during the first few days in the hospital (i was constantly hooked up to an ECG machine) my heart rate was as low as 30 but in front of my eyes would jump to double that. Every time I went off to sleep the machine would alarm and they would have to lower the bpm alert level again.

By the end of the week it was constantly above 60 but they did not tell me what was happening at night as I had moved ward and was not aware of the alarms.

I think I understand more about what you are saying and it very much makes sense now that they did seem to have no other choice if you say that 30 bpm is a big concern.

I have been using a garimin chest heart rate monitor for exercise for 4 years and during exercise it has never ever dropped to a strange rate but i have never used it at rest. All the times I have ever checked my pulse over the years when resting it has been around 60. It is this what makes me think that this was an acute issue but without years of ECG data I suppose one would argue that does not prove anything is that right?

I will put my questions together before my first appointment which I expect will be a mix of explanations on my particular issue and future settings of my pacemaker.

As I mentioned to crustyg have what I would describe as heartburn in the very centre of my chest but I do not think it is shortness of breath. I also went for an easy walk yesterday and my heart rate was struggling to get above 100 which I thought strange.

One thing I did not see on my discharge notes was confirmation that my thyroid function was correct. Is it very unllikely they did not test for that? 

I wish you well

by Gemita - 2020-11-19 06:40:38

John,

In the UK with COVID-19 raging and the need to keep us out of hospitals, do you really believe you would have been given a pacemaker if it wasn’t absolutely necessary?  Do you really believe our hard pressed NHS would squander money on a patient if it wasn’t justified?  They might squander money in other ways but on the patient, never in my experience.  There are certain guidelines that have to be met BEFORE a pacemaker can be given to a patient in any event and with the initial cost of the hardware and the long term costs of caring for a pacemaker patient, this amounts to a lot of money.  So with this in mind I think you can be confident that there was an indication for your pacemaker.  

A second opinion?  I fear it is too late since you now have a pacemaker and who would remove it or challenge the original need for it?  And who can say with certainty that you won’t need it in the future?  When electrical disturbances start to appear like blocks and slow heart rhythms in my experience they will always progress and I would rather have a pacemaker in place to protect me from a sudden acute symptom which could cause a fall or worse, an accident when driving, both of which have already happened to me.

Now that you have your pacemaker, use it to your advantage to find out what is going on.  The pacemaker will keep logs of any significant rhythm disturbances which might make a block more likely.  Learn what is happening is your best defence now to getting answers and the right adjustments for you.  Learn, learn, learn, don’t go negative on yourself and on us, will you.  Perfectly natural, but we won't allow it, will we.  We all need lots of positive vibes in the present climate to keep us well because negative feelings will greatly affect your heart and general health.

Your heartburn might be caused by stress over your procedure or from the procedure itself, so if this continues I would speak to your doctor.  A very short course of a PPI might help neutralise the acids which are building up and help with the chest discomfort.  I had this problem following my procedure although I do have gastric issues too.

John I hope I haven't come across as uncaring because I can understand your doubts with the original diagnosis.  I have been there myself many times in my life.  If you continue to feel unwell, I like others here would urge you to go back to your doctors for some additional checks to make sure that nothing is being missed.  I do sincerely wish you well

Thank you

by quikjraw - 2020-11-19 12:57:08

No of course not Gemita you do not come across as uncaring 

I think you make some very valid points that I need to consider and come to terms with. 

I will ask my GP about the heartburn issue and mention PPI as a trial.

Thanks

John

more

by Tracey_E - 2020-11-19 13:13:49

I doubt thyroid would have been on the discharge notes but it should have been included in your blood work. They would have checked before giving you the pacer, thyroid pills are a lot cheaper than a pacemaker! 

Easy way to tell if you need it... ask how much you are pacing. 

My heart has taken big dips while working out that did not show up on the monitor. My ep found them on a stress test and programmed the pacer to prevent it. 

The heart can move in and out of block. With some people, when we exercise the  heart will kick in and start behaving properly which may be why your monitor didn't catch anything. Or the monitor missed it.  It's when we are sleeping it can dip the lowest and we are don't feel any symptoms which makes it the most dangerous. You don't want to go to sleep one night and not wake up, which is what can happen if the rate gets too low or if the delay between beats gets longer with each beat. Think of the pacer as your insurance policy. Yes, sometimes your heart beat normally. That's great. But when it doesn't, the pacer is always watching and will take care of it. 

Are you taking pain meds? They trash my stomach. Sleeping in unusual positions? Stress? Lots of things can cause heartburn but be sure to mention it.

I can't think why you'd have trouble getting over 100 while walking but be sure to mention it to them. Tell them the day/time, they can see if the pacer picked up anything. It does not record like an ecg but it will record events and it always records pacing. When I got my first pacer, it turned out I had a couple of minor sinus rate issues that were masked by the block. When we fixed the block, the sinus problems were suddenly obvious. It was all fixed with settings. Sometimes electrical issues are a mixed bag and we have other quirky things going on with the block. It's nothing bad, it just takes some time to sort it out and get the settings fine tuned. 

The closest you can get to years of ecg data is an implanted loop recorder which is a surgical procedure similar to getting the pacer. Non-invasive route would be a holter monitor which we wear for a few days up to a few weeks. But what will they be looking for? Drops like you already recorded while in the hospital. The pattern to how often it happens is irrelevant. If you got a loop recorder, the first time you dipped to 30 you'd be getting a phone call to go get a pacer. 

Thought!! When it recorded 100 while walking 1) did you count it manually or did you go by the monitor? Because the pacer can confuse the monitor and 2) how did you feel? I often don't get much over 100 while walking and I feel fine. If I break into a run it shoots right up but walking it can stay low, esp if the weather isn't hot. 

I know this is really hard to wrap your head around! We've all been there. Questioning the need for it is ok, but you reach a point where it's best to accept that it was necessary and put that energy into figuring out how to move on. Work with your doctors to get it programmed so you can live a full active life then get on with living your life. 

Rechecking HB once you have a PM

by crustyg - 2020-11-19 16:44:32

Hi John: Yes, it's still possible to assess your HB even with a PM.  Two ways: one, examine the ECG carefully (you can almost always see a pacing artefact, even with bipolar leads) and measure the time to vent activation (unless the PM's interval is set too short and it paces the V lead anyway).  The second way is to stop your PM pacing your vent lead (or both) whilst recording your ECG.  Simples!

In fact, for many folk the EP-techs will do this as part of the standard follow up interrogation (depending on your primary heart rhythm disorder) they will stop pacing and see your natural 'escape' rate (usually with you sitting down....) and drive your HR up to assess reliability of capture at a high pacing rate.

HTH.

Second opinion on pacemaker decision

by quikjraw - 2020-11-20 11:41:46

Tracey_E

I've only been taking co-codamol as and when I need it at the moment but since I wrote the post this "heartburn" feeling has now subsided so clearly I was being an impatient patient!

I will make sure anything unusual is recorded with a date and time next time so they can look at it in more detail when I see them. I may have been over alert to issues where there aren't any  - i don't normally wear a HR chest band when walking so maybe 100 or so is normal for me when walking, to be fair I was taking it easy with the pace because of my arm.

Thanks to the answers I have been getting on here then I am starting to focus more on the next steps rather than the why. I am not used to being given next-to-no explanation of things especially as for me this is the biggest health-related thing to have happened even considering my Ankolysing Spondylitis.

What had planted the most doubt in my mind was going down to have the pacemaker fitted the first time and then the Dr changed their mind at the last minute and asked for an MRI instead. 

crustyg

Interesting how you can see the pacemaker working on an ECG I will have to keep an eye for that when they see me.  

I assume by primary heart rhythm disorder you mean from the sinus node?

kind regards

John

What was the question?

by Gotrhythm - 2020-11-20 16:09:24

I reread your post several times in an effort to understand exactly what you were asking.

You appear to be concerned that you were given a pacemaker you didn't need for a heart block condition you don't understand.

Heart block was very hard for me to understand when I tried to read a description and                 picture it in my head. Fortunately there's a Youtube for just about everything. Try typing Youtube heart block animation into your browser.

Once you understand heart block, you'll have a better grasp of what your pacemaker is actually doing and when it's doing it. People like you (and me) who have intermittant heart block will sometimes see extreme variation in heart rate.

Here's the thing to understand intermittant heart block. The block only happens sometimes. So sometimes you don't need a pacemaker and sometimes you do. But when you do, you need it and you need it right then. So the best thing a doc can do is give you a pacemaker. The pacemaker is always there, always watching, always ready to kick in whenever you need it.

At the end of your post you said you'd feel more sure you needed a pacemaker if you felt better. I understand and sympathize. That makes perfect sense to me. Unfortunately, not everyone does feel better immediately. It might take some time, and several adjustments to your pacemaker to get you feeling realy good again. 

In the meantime, think positive. Ask the doc to show you the EKG or whatever showed the heart block. It's time to put the question of whether you needed to pacemaker or not behind you.