Things go wrong

Hugs and sighs

by Lavender - 2023-06-28 12:25:22

Oh Piglet, this sounds so frightening and frustrating. Why oh why can't they put you in the hospital until your meds and rates are stabilized? 
It is the same in the USA-emergency care is lacking and they usually discharge you without any valid solutions which leads to repeats of emergency care😵‍💫

I think we have to be persistent in being more forceful in demanding attention here. I don't know about your country. 
 

In any case, you deserve top quality care. May help be forthcoming! Hugs

Arrhythmias out of control?

by Gemita - 2023-06-28 13:04:49

Piglet, 

I know you are at the end of your tether, but can I ask that you remain calm during your telephone consultation tomorrow or Friday?  From where I am sitting there are two main concerns I believe:-

Why is the pacemaker allowing the Base Rate to fall to such low levels?

What can they do to stabilise and identify the arrhythmia that is causing your symptoms?

Additionally I would want to know whether your heart condition has changed and whether your current pacemaker is able to support your needs or whether an upgrade is required, or adjustments need to be made to your current system? 

As an arrhythmia sufferer living in the UK, I do understand what you are dealing with and the frustrations to get treatment and an acknowledgement that you are extremely symptomatic, requiring emergency assistance.  This is a clear sign, at least to me, that your arrhythmias are out of control.  At the same time, I understand your frustration and concern with your pacemaker and its inability to provide you with a degree of support when you most need it.  

Both your arrhythmia(s) and pacemaker need urgent review by an understanding, competent consultant who will listen to you.  But is such a consultant available in your location?  Would it be possible to seek a one off private consultation either in your area or in London, to see how things could move forward?  If you speak to a good Cardiologist in the next day or so, all well and good, but if not, you could perhaps ask the doctor for the name of his consultant, then ring the secretary and ask for a private consultation, or engage your GP again, especially since they will know that you had to seek emergency help.

I am spoilt under my London hospital and there are many good consultants within Electrophysiology. It is the same with other top London Hospitals and you may have to consider a one off visit and second opinion with another EP/Cardiologist especially in the present NHS climate where "locally" services may not be so good.

Are you prepared for your telephone consult Piglet and do you want to discuss with us any questions you have, so that you are well prepared, or wouldn't it help?

I wish you all the very best and hope that you will finally break through and get the treatment you deserve

"Your pacemaker is working fine."

by Gotrhythm - 2023-06-28 14:31:59

My sympathies.

The one sentence in the English language that will infallibly cause me to see red is "Your pacemaker is working fine."

I never have completely lost my temper, despite my frustration. With the grace of God, I never will. Though there was the one time I threw my hands in the air like a religious convert at a revival who has seen the light, and shouted "I believe! I believe my pacemaker is working!"

Sometimes it seems like the hardest part is just to get the professional's attention.

Still, the important idea to communicate is, "Could my heart be doing something that the pacemaker isn't programmed to deal with?" With any luck, that question turns the professional's attention where you really want it to be.

I'm so sorry you're having a hard time. Have you seen the results from the EKG?  Hope you can get a handle on the problem soon.

Heart Monitor

by Penguin - 2023-06-28 16:12:36

Hi Piglet, 

What a mess!

Surely there is a point at which any patient is entitled to be exasperated and dare I say it, angry that they are not being listened to or helped appropriately.  I know you don't want to go into London but there comes a point....

Presumably you were on a heart monitor in hospital? Can you ask the consultant to share a copy of the ECGs with you and to explain what was found?  You need to know what caused the troponin rise and whether it might happen again if your h/rate is irregular and low?   

What evidence did they find for bisoprolol as the potential solution?....Don't beta blockers limit h/rate?  

If the cause can't be dealt with by the PM - and that could be a possibility - you need to understand whether they can stop your h/rate falling to 30 bpm so frequently via any other means.  

I hope you feel better soon. 

Timing issue with PVCs?

by Gemita - 2023-06-29 02:31:27

Piglet, I know you feel with your ectopic beats (as I do) that they are potentially causing a timing issue and I am wondering whether there would be a benefit in asking the Cardiologist when he calls today or tomorrow whether you could return to clinic for some thorough checks and/or adjustments and whether the manufacturer representative could be present to assist?  It is known that PVCs can upset the timing of a PM and that is something I would respectfully ask about?

Have a read at the Medtronic PVC response link for further info to help with any discussion:-

https://www.medtronicacademy.com/features/pvc-response-feature

Thanks all

by piglet22 - 2023-06-29 05:39:37

I'll add more once I've spoken to the consultant.

Most grateful for for all the advice and support.

Had another fall last night after getting up from sitting. I'd been extra careful how I did it, but it got me in the kitchen.

At least some plates and glasses won't need washing again.

Gemita

That link looks interesting and does fit. Why on earth don't they mention things like that? Probably because we won't understand it.

The key thing is why you get bradycardia when an IPG minimum of 70 BPM is set? Clearly the timing isn't working.

I can cope with the tachycardia if a dose of beta blocker calms it, but the bradycardia is something else, that's scary.

I will also want to know how all this goes on and nothing seems to trigger the MyCareLink monitor. If it does then why don't you ever here from them?

I have my suspicions. Maybe what they did last night is more important than checking data.

Gotrhythm Yes, that phrase is becoming a bit hollow once you've heard it a few times. It's hard to understand that they ignore all the other symptoms as though it doesn't matter.

I suspect they, the physiologists, are under strict instructions to do the tests and don't engage in anything else with patients.

I have to laugh when I get their letters.

"You are under the care of so and so" Like hell you are.

There's something very wrong with our NHS. There's a big disconnect between large regional hospitals and individual patients. They do the trauma stuff well enough, but the aftercare is a different story.

I'll update once I know more.

One thing I will say is that without the support of this highly knowledgeable club, the outlook would be grim.

Lavender and Penguin

by piglet22 - 2023-06-29 08:35:18

Lavender. You are quite right. This goes beyond frustration. The NHS is at a tipping point and I can't help thinking that patients are the pawns in the struggle going on right now.

There is an argument that we pay for this free service through taxes and National Insurance or more precisely, those in employment pay for the service but don't get what we might reasonably think we should get.

Nobody wants to get their day off to a bad start and a trip to one of the busiest, cramped, worn out A&E departments is a bad start. I can cope with the tachy, but the brady is causing me quite a few falls.

So far I've been lucky with just a few cuts and bruises, but last night a couple of plates hit the deck and I can see that a broken plate or glass in the chest might be more serious.

Penguin. I'm starting to warm to the idea of getting more help and I'm at the give them a chance stage. It's a lonely business when you feel cut off from help you reasonably expect to get.

Did you mention errors on the BP monitor? I'm sure I saw something mentioned but can't find it.

My old Omron M10 IT is my life support system. It tells me everything that's going on and I trust it without reservation.

When it throws up errors and there's no reasonable cause like me doing the tango, then I know it's bad. It gives up the three readings attempts and tries for just one.

That plus the oximeter are bedside chums.

Yes I was well wired up. That plus two canullas made certain things like drinking tea or loo difficult to say the least. Very undignified.

My local regional is Royal Sussex County Hospital and for as long as I can remember, it has been a building site. A&E is particularly bad.

Wall to wall trollies and a poor woman 6 inches away from me being treated for a possible heart attack. She was being given GNT in the corridor.

The head Charge Nurse was a sight to see. A lady with bigger biceps than me, tattoos on every bit of exposed flesh. You wouldn't need security if she appeared. Hatti Jacques in Super Woman scrubs.

Ha!

by Penguin - 2023-06-29 13:14:55

Sense of humour's intact then!  :) .... for now! 

Hope that EP / Consultant doesn't turn out to be Sid James in scrubs.

Carry on Piglet! 

Penguin

by piglet22 - 2023-06-29 13:44:08

Or Kenneth Williams, Barbara Windsor or the rest of the staff of Bodget Hospital.

This charge nurse was a sight to see. Uniform several sizes too small.

I don't think she would pass muster in those days

I have a feeling though that humour will be short lived. I've just read the consultant's notes and they seem to be totally unrelated to what's going on.

My problem is slow erratic heart beat after relaxation and subsequent low blood pressure. Now he's talking about Atrial Fibrillation and atrial breakthrough and prescribing anti-coagulants. I still can't get a straight answer to why a PM set to minimum 70 BPM is letting me get as low as 30 BPM and that's by BP monitor, oximeter and old fashioned wrist and stopwatch.

Every day this goes on, I have to wonder when the next fall or worse is going to happen.

Talking and brick walls comes to mind.

Atrial Fibrillation

by Gemita - 2023-06-29 14:24:56

Piglet,

I see from your comments to Penguin that you have just read the consultant’s notes talking about Atrial Fibrillation (AF) atrial breakthrough and prescribing anti-coagulants, so things are clearly progressing.  Which consultant are you referring to Piglet, the A&E consultant, or your pacemaker clinic/hospital consultant.  I presume you haven’t received that phone call yet?

While AF is potentially more serious, it can be triggered by ectopics, so keep bringing their attention back to the fall in heart rate which shouldn’t be happening.  Keep this pressure up, since I believe it is so fundamental to treating an arrhythmia like AF and more importantly to help treat your dangerous symptoms which could lead to serious injury.  

While I accept a pacemaker cannot treat or cure an arrhythmia, only medication, ablation, or cardioversion might help give some respite, we still need an explanation as to why our lower rate limit can fall well below the set rate, destabilising us in the process?

Update:  atrial breakthrough sounds ominous as though you have had an AV Node ablation and your high atrial rates are still getting through your AV node to push your ventricles.  Or are they referring to your Block?  I expect you have Mode Switch in operation to prevent the tracking of a high atrial rate. I must check your Bio.  We will get to the bottom of all this Piglet.  It does seem you are getting some answers

A.F.

by Penguin - 2023-06-30 06:49:48

If your notes show AF and this is a firm diagnosis backed up by the ECGs taken in hospital, will you accept anti-coagulation?