Latest checkup

Not optimistic either

by Gemita - 2024-02-27 16:18:32

Hello Piglet, it doesn’t sound as though you had a particularly eventful consultation or had much time to discuss where to go from here.  May I ask if you saw the same consultant and what he said about a regular follow up and a holter monitor, or are you satisfied that the ectopics have abated?

Ejection Fraction and echocardiogram results are reassuring that your earlier difficult symptoms have not adversely affected the pumping action or structure of your heart.  I hope you asked for a copy of your echocardiogram.   How are you going to reduce Bisoprolol, slowly over a period?  Were you given any recommendations?

The Medtronic manual I sent you recommends that as soon as your device reaches Recommended Replacement Time (which is 3 months before the ERI period) see 6.7.1.2 Battery voltage and replacement indicators where it recommends that if 3 consecutive automatic daily battery voltage measurements are less than or equal to the Recommended Replacement Time value of <2.83 V, contact Medtronic and schedule an appointment to replace the device.

What did the consultant say about lack of feedback and a phone call following the annual download.  Did you get something sorted, or are you still in the same position?  What would I do?  Keep sending in regularly a transmission and then ask the pacing clinic for feedback and whether your Recommended Replacement Time has reached <2.83V and quote from your manual.

Replacement

by Penguin - 2024-02-27 17:55:16

Hi Piglet, 

Not much info from a long awaited appointment ?? Maybe you'd prefer not to post it? 

FYI - I've had one replacement. I was informed that in the UK pacemakers are listed for replacement once the battery is showing that there are 12 months remaining.  Reason provided to me was  a) little trust in the figures which suggest how much battery is left and b) the unreliability of data leaading up to ERI.

There may be regional variations of course, but that was the advice I received. 

It would be handy if other UK members could chip in with what they were told perhaps? 

Thanks G and P

by piglet22 - 2024-02-27 18:50:15

Yes, all a bit rushed.

I got the feeling that he would rather be on the road home.

G.

Same one as before.

Answer to Holter. Hmmm

Ectopics come and go. Feedback Hmmm Ask for F2F..

Copy of EC. Didn't occur to me, consultant getting twitchy..

12 month battery came out of the blue, no advice and nothing about how to reduce Bisoprolol. I shall start tonight.

P

The consultant has other interests that pay more 

I didn't expect a lot and wasn't disappointed.

You are right about the 12 months. Trouble is, in an ideal world, you might get some warning, but I can't help but feel that it doesn't happen.

Bear in mind that the only reason I was seeing someone was because of an unrelated issue, the ectopics.

The fact that 12 months was left was coincidental. That information is already over 2 months old.

My conclusion is that nothing much has changed in this health trust and complacency rules.

At least I know what to expect when it happens. Keys, money, phone and bus pass.

Hi

by Lavender - 2024-02-27 21:53:09

I'm impressed with your EF. 👍🏼

Sounds like a rushed trip. 
I think your care has been dismal but you sound in good shape. Hope your replacement goes smoothly in the months to come. 🌺

Self Advocacy

by Penguin - 2024-02-28 04:35:47

Hi Piglet, 

Given your concerns about replacement and the issue Gemita raises re: discontinuing / reducing bisoprolol and previous issues when you discontinued a different BB would it be wise to put something in writing or consult your GP for additional advice?

a) Could you state your concerns about battery life remaining and ask about the plans for replacement  - which device and when? 

b) Ask for advice re: how to reduce the dosage for the beta blocker. You are on a hefty dose. 

I'd also ask your GP:

1) What will replace the high dose BB as treatment for the ectopics given the previous serious symptoms and hospital admission for collapse on a lower dose? 

2) Might you expect any symptoms from adjusting the dose downwards and how to manage the dose reduction if they occur?

3) Are there any inbetween doses for a more gradual, stepped decrease and is there any merit to a stepped approach? e.g.  20mg x 1 week or longer, 15mg x 1 week or longer, 10 mg x 1 week or longer to arrive at say, 5 mg?  

This article explains how Bisoprolol works. 

https://www.drugs.com/tips/bisoprolol-patient-tips. (It may not be the best article, so speak to your GP).

Note: Everything I've read refers to discontinutation over AT LEAST 1 week. I don't know how this applies to dose reductions  - do you? (I am extremely cautious, so take my suggestions with a pinch of salt & check with your GP.) 

Thanks all

by piglet22 - 2024-02-29 12:22:13

It was a bit rushed, late in the day.

Considering this was a follow up, you might reasonably expect results of tests and changes of medication to be high up the list of items.

Not a bit of it. The consultant never mentioned the echocardiogram or the Bisoprolol dose until I asked him. The Holter was mentioned as it was something he was going to arrange, but nothing further was said.

All he said about the Bisoprolol was to halve the dose from 10 to 5 mg daily, not how or over what period.

I have dropped it from 10 to 7.5mg and have already noticed skipped beats, presumably as the ectopics break through. I shall keep it on this dose for at least a week then try 5mg.

If the ectopics return I will go back to the old dose or 7.5 and put up with the few missed beats.

The battery news was casual to say the least. A year ago, I was told that I would be going onto more frequent monitoring, but now 3-months into the final year - last data was 4th December 2023 - still nothing heard. I wonder if the consultants talk to the physiologists?

Penguin

I did look at www.drugs,com and the first thing you see in contraindications for Bisoprolol is AV block. As I understand it Mobitz type 2 is AV block which has now progressed to CHB.

Funny business having the device to treat block then prescribe something that presumably makes the block worse. I suppose the thinking is that if the block is there anyhow, adding something to treat the ectopics won't make matters worse.

The only positive thing is that the Bisoprolol stops the worse effects of VE, at the cost of exercise capacity. He did say that this was the beta-blocker.

I wonder if a spell on a treadmill in clinic would confirm that?

Treadmill

by Penguin - 2024-02-29 13:28:55

Re: Treadmill test

I suppose that your problem is going to be the Bisoprolol.  If the VEs come back when you discontinue and you decide to re-instate, it's going to be difficult to spot the VE's.  OTOH if you put up with skipped beats and push through this to see if symptoms improve with a lower dose (risky?) you should get a result from the treadmill test and evidence of what is happening with exercise at least.

If you leave it until the last minute to discontinue the bisoprolol (e.g. once you have the date of the test) you could get worse withdrawal symptoms if you stop quickly.  

I'd ask for some advice. 

Can you book an appointment with your GP to discuss all of this. You need some decent advice about the bisoprolol and to find out if the skipped beats are likely a recurrence of the previous issue or linked to reducing the drug and possibly temporary. 

It's hard to know what to do for the best and there may be some compromising to do between exercise capacity and drug dose. 

From the little I know about AVB, I believe that Mobitz II is quite likely to progresses to CHB over time in most people - but check that info as I'm not a reliable source of info when it comes to AVB.  Weren't you taking another BB for years before this one though? 

Would it be worth asking your GP if there any drugs (other than BBs) that might help with ectopics and that might not impact as much on your exercise capacity? You could ask. 

Re: your echo. Your GP ought to have a copy along with other test results.  If he hasn't got them could you ask him to request them before you go in to see him? 

I'm so sorry this is happening to you Piglet. 

Ask for your pacing records and echo results to be placed in your MyChart

by Gemita - 2024-02-29 15:08:06

Piglet, I went on to my MyChart last night and saw a new follow up report.  It stated my lead voltage was now 2.97V (Recommended Replacement Time would be when my voltage is 2.83V).  The status message on my battery is now MOL1 (whatever that means) and I noticed that a change is recommended for “lead polarity to be adaptive”.   Update:  MOL1 = middle of life (thank you Lavender).  My battery still seems to have a few years remaining to ERI.

Anyway, just wanted to say how helpful it is to have this sort of feedback.  Is there any way you could ask your clinic to send you a report on MyChart of your last download?  You would then be able to see some of your actual settings and battery/lead values so whenever you send in a report, even if unscheduled, you could ask to receive a follow up report in due course, especially if you start getting symptoms.  The technology is there Piglet and I would keep pushing for better monitoring.  I know it is a nuisance to keep ringing, but the squeaky wheel gets the grease as we know from our American friends.

Of course not only have you got a problem with ectopics, you also have heart block, both of which may affect your pacing requirements.  With medication that slows conduction through the AV Node, they may need to adjust your settings more, to make you more comfortable and to help control the ventricular ectopics.  Bisoprolol is generally a good, safe med.  We are both on it, but at much lower doses.  Alternatives would be the calcium channel blockers like Diltiazem, Verapamil for the ectopics, but I think you are already on a calcium channel blocker (Amlodipine) for high blood pressure, so you are on maximum therapy.  I would work with Bisoprolol since you know it now.  The alternative that might help but would wear down your battery faster perhaps, would be to raise your lower rate limit to 75 bpm.  This in effect would help to fill in the pauses between any single ectopic beat,  helping to prevent them from taking hold as you slowly reduce Bisoprolol.  Just an idea of course, but these are the sort of discussions you should really be having with your technicians/consultant, but how can we get you back there?

The treadmill will be useful when you have reduced Bisoprolol to 5 mg, so they can challenge you at this level of therapy, ectopics and all?

Unfortunately it is not unusual for folks with arrhythmias to need a pacemaker just because any medication they take to reduce heart rate could cause severe bradycardia and conduction delays.  Sounds crazy doesn’t it to implant a pacemaker for this reason alone, but it happens with some patients who cannot stop a fast arrhythmia without rate lowering meds which would lower their heart rate to dangerous levels without a pacemaker to prevent this.  That is one of the reasons why I have a pacemaker, although I had syncope and significant pausing too + bradycardia.

Ask for your electrolytes to be checked, particularly potassium and magnesium and for other bloods to check thyroid levels and anything else your doctor can think of as a cause for your heart rhythm disturbances.  Go easy on the Sloe Gin and any caffeine Piglet.  Don’t know what else to suggest?