First follow up appointment following implant

I have managed to get a date for my first follow appointment and it's Monday. They said it is with the technicians?

Thanks to the people in this club I have been able to put together a list of questions

Do you think these are reasonable questions or do you think I am being a bit overbearing?

What sort of blocks did have during my time in hospital?
Did I have mobitz 2 or mobitz 1 as thought mobitz 2 was not associated with a lengthening PR interval? and I had a lengthening PR interval.
Was there no evidence of inflammation on any blood test? 
Was my Thyroid clear of issues?
May have a copy of the data or settings for my own records so I can learn more.
Have I got I rate response on? I do not think I had had any issues with my heart rate rising during exercise?
How much of the time is my atrial and ventricular pacing occuring?
Is it pacing in the night or at rest to a minimum of 60 and if so would it be possible to lower it so it is not atrial pacing when not needed (my resting bpm for many years has been in the 50s) it's waking me up at night.
Will it be useful for me to have a treadmill stress test?
What is my upper pacing limit set to? I get to 190 sometimes when running before the implant.
Where was my ventricular lead placed?
What happened on 15/12/2020 at around 13:00, my heart rate was above 100bpm for hours.


18 Comments

Yes definitely flag your tachycardia event on 15 Dec

by Gemita - 2020-12-16 06:28:10

John,

Firstly really glad your heart rate has settled after a good night's sleep.  Great news.  I will answer this new post of yours later when I have more time. 

My immediate thought though is that your appointment on Monday is probably just with the technicians, not with the Cardiologist.  This means that they will just carry out the usual checks on the pacemaker:  leads, battery, downloaded data and see whether there have been any significant events, look at settings, % pacing, arrhythmias and so on.  They will also want to know about any symptoms you have had, so make a list of these which will help them to make any necessary adjustments.  Some patients even manage to get their technicians to give them a copy of their downloaded data (if you take a thumb drive) but I have to apply formally to receive this myself.

I am also in the UK.  My technicians don't usually want to engage (they don't usually have the time or authority to answer certain questions), telling me instead I should speak to my EP/Cardiologist, although my last interrogation (because of COVID-19) meant fewer patients took up their appointments and my technicians had plenty of time for me and gave me so much feedback.  Some of your questions though may need to be directed to your Cardiologist, not to the technicians, but I will go through them and give you my thoughts later.  

First device check

by Sisterwash65 - 2020-12-16 08:21:33

I don't think your questions are overbearing at all. YOU are the best advocate for you and your needs ! I'm in the US hut I have the same PM as you. My device reps have been quite helpful in answering questions so I'm hoping you will get some answers. At my very first device check, I received a Summary Sheet. On it all pertinent information is listed. You pacing percentages, mode, sensitivity setting, rate response on/off, etc. So ask them for it if they don't offer it. As for your list of questions, In my experience the questions about thyroid and inflammation are related to blood work and probably need to be addressed to your cardiologist. I do know  that thyroid problems ( under or over active ) can cause bradycardia so that is usually checked prior to PM placement.

This forum and having your device summary sheets will help you learn more and that's always a good thing ! Best wishes on your visit Monday !

questions

by Tracey_E - 2020-12-16 08:49:06

Anything related to what happened in the hospital and diagnosis is for your doctor/nurse not the pacemaker technician. All the tech has access to is the pacing reports so save those other questions for the doctor. 

The last question I would modify to were you pacing atria at that time. 

Whether you come across as overbearing or curious depends on the delivery. I have found that when they realize I genuinely want to understand how things work, they have no problem explaining things to me. 

Hope this helps

by Gemita - 2020-12-16 09:13:00

John,

My advice when asking questions is to keep the list short.  Better to ask a few questions and get them all well answered than to ask too many questions and come away feeling that “nothing has been fully covered”.  This has been my experience. Remember too that appointments may be rushed, so stick to your important questions only.  You will have plenty of time to ask your cardiologist/technicians further questions in the future, to ask questions here and to learn online when you get access to your data downloads.  None of your questions are overbearing.  They are after all all important questions to you that need to be answered, but perhaps not all at once!!

I would divide up your questions as follows:-

For the Cardiologist:-

Could you please confirm the type of blocks seen during my time in hospital?

Did I have Mobitz 2 or Mobitz 1 as I thought Mobitz 2 was not associated with a lengthening PR interval? and I had a lengthening PR interval??

Was there any evidence of inflammation on any blood test? 

Was my Thyroid clear of issues?

Would it be useful for me to have a treadmill stress test?

Where was my ventricular lead placed?

For the Technicians:-

May have a copy of the full data downloads or settings for my own records so I can learn more??

Have I got rate response on? I do not believe I had any issues with my heart rate rising during exercise?

What is my % atrial pacing ?  What is my % ventricular pacing ?

Am I pacing in the night or at rest to a minimum of 60 bpm and if so, would it be possible to lower the rate at night so it is not atrial pacing when not needed (my resting bpm for many years has been in the 50s).  A high atrial rate is waking me up at night.

What is my upper pacing limit set to? I got to 190 bpm sometimes when running before the implant.

What happened on 15/12/2020 at around 13:00, my heart rate was above 100bpm for hours.  Flag as an important event for you which you may want to discuss with your cardiologist when you see him/her too

Questions

by AgentX86 - 2020-12-16 09:54:05

Medical questions shouldn't be asked of device technicians nor will/should they answer them. Any questions you have should be limited to the device and device settings. Perhaps you can ask what the maximums the EP has set for you bet not why. Device technicians are not doctors and cannot answer medical questions.

Technicians in the UK

by IAN MC - 2020-12-16 10:12:12

QUIKJRAW     I see you are in the UK .  Agent is giving an American perspective on technicians.

In the UK , " technicians " are known as Cardiac Physiologists . They all have University science degrees and have received extensive further training in all cardiac issues. They are regarded as full members of the cardiac teams.

I have now had a PM for 10 years and have never had any reason to see the E.P. who installed my pacemaker in that time. 

My " technicians" have satisfactorily answered every one of my technical / medical questions .

They  have arranged adjustments of my PM while I ran on treadmills, they have, sometimes at my suggestion, sometimes at their's ,made several important setting adjustments over the years.

They appear to have a high level of responsibility and rarely need to involve the medics ... I'm sure you will find it the same in Stafford.

As with all specialists,( which our technicians are  ) ;  some are much better than others !

Best of luck

Ian  ( Bucks. UK )

 

And my experience in the UK is somewhat different Ian

by Gemita - 2020-12-16 10:50:57

I think we have had this conversation before.  I agree totally that technicians here are more than able to answer questions on a wide range of subjects, both medical and pacemaker related, but in my experience they are not always willing or authorised to do so.  My last pacemaker interrogation appointment though was perfect with so much information given to me, but this was at Guy's Hospital rather than my usual St. Thomas' Hospital where technicians always tell me to discuss my results with my medical team which I find so unhelpful and frustrating.  I came away from my last pacemaker interrogation at Guy's Hospital with far more information about my arrhythmias than I could ever have hoped to learn from my busy EP during a short routine appointment.

But I agree with Tracey_E, AgentX86, Sisterwash that questions on specific medical information, for example blood test results for thyroid, inflammation, original diagnosis might best be discussed with the EP/Cardiologist

 

Gemita

by IAN MC - 2020-12-16 11:10:41

Phrases like " not always willing or authorised to do so " are light - years away from the experiences I have had.

I wonder  if I have been lucky,  or you have been unlucky . We will never know   !

........... but it is true that we must never assume that our own experiences apply to everyone.

Ian

 

Ian

by Gemita - 2020-12-16 11:29:44

I think St Thomas' is just too busy!!  Too many of us needing the same care.  I think I am moving to Bucks !!

Gemita

by IAN MC - 2020-12-16 11:35:31

There will be a glass of bubbly waiting for you  !

Ian

Wow

by quikjraw - 2020-12-16 11:39:30

What a very thorough reveiw of my question thanks all.

I have taken those comments on board and will possibly rearrange them in order of importance to me and likelihood of them being answered. I will also amend a couple as advised.

Some of the questions at the start are really just a repeat of the facts I suppose rather than opinion, with maybe the exception of the mobitz 2 or mobitz 1 question. I am not so sure about this question to be honest. I had read that mobitz 2 very rarely also had lengthening PR intervals yet I was told I had a lengthening PR interval up to the point a conduction was skipped. So trying to figure out exactly what was going on at the time.

In the UK I think the EP-tech's latitude depends more on the responsible EP-doc

by crustyg - 2020-12-16 14:20:47

My experience, Ian, is that while I can charm the EP-techs into doing crazy things like stopping my PM pacing me at all during my MRI in March, every time I've touched on the subject of increasing maxHR or changing PM recovery time their relief is clear when I say, 'perhaps I'll ask Dr <X> for his approval'.  I try not to put them into the position where they have to just refuse my requests.

I suspect that my EP-doc isn't keen on them making changes that could get me into trouble (whereas turning off pacing to assess any escape rhythm can be part of the standard annual review, and if I start to keel over it's the work of moments to turn it back on again).

But I agree, I haven't actually *seen* my EP-doc since implantation.  It's all letters/emails, and that's fine with me.  And, I suspect, him...

 

EP techs

by Sisterwash65 - 2020-12-16 14:47:32

While we're all on the subject, I'd like to know how/ when my EP doc and the device techs discuss and decide what settings to change, etc. Does anyone know ?
The doctor that implanted my PM is who I always see. I've been in 2 times since  I got my PM on May 28, 2020. The device tech is there and does the wand and programmer. My doctor told me he goes over all the numbers and data in my 3 month reports.  Our device techs in the US are also highly trained by the companies they represent and mine was present in the room when my PM was implanted. He also saw me the next morning and checked out my PM before I went home.

I was just wondering if anyone knows how the doc and tech coordinate what needs to be done, if anything.

 

EP techs

by Gemita - 2020-12-16 15:02:30

Sisterwash65, I usually see my EP once every 6 months (well pre COVID-19) and he goes over any symptoms I may have.  Depending on my symptoms, like chest pain, breathlessness, dizziness, worsening tachyarrythmias, he would do a report (he usually types it in my presence!!) and suggests any setting changes that might help.  This is sent to my EP's technicians, located a few doors away.  It is a large teaching hospital in London.  Sometimes the EP's technician attends my appointment as well if anything needs to be discussed.  

In the future, they plan to give me an appointment to attend clinic for both EP appointment and pacemaker check on the same day.  Does that answer your question?

EP techs

by Sisterwash65 - 2020-12-16 17:57:27

Thanks for your input, Gemita. I'm going to ask my doctor when I see him in late January. I'd just like to know, not that it matters really because I'm sure my doctor has the last word ! 

Device techs

by AgentX86 - 2020-12-16 20:52:54

Evidently the requirements for these professionals is different across the pond.  In the US they are proper technicians.  They run the gizmos but have no medical input whatsoever.  They can tune the PM to a certain point (my tech changed my clock and the rate response sensitivity today) but are not licensed to practice medicine.  Many actually work for the manufacturer.  Mine used to but now works for my cardiologist, who works for a major hosptal (one of the side effects of our "Obamacare").

It's a felony to practice medicine without a license so techs shy away from that edge.  That's what doctors are for.

The settings that would affect my health (max/min, modes, etc.) are written into my medical records so the device tech gets them from there.  Minor stuff like RR dynamics and night mode timing is a QOL matter and is left up to me (with help of the device tech, obviously). 

Bring a note pad

by Persephone - 2020-12-16 22:51:47

Quikrjaw, in addition to the very comprehensive advice you've been offered by the wonderful contributors on this site, remember to take a note pad (unless you're very efficient at taking notes on your phone). It's challenging to ask these questions that are new to us and also interpret the answers at the same time, all in the setting of a relatively brief clinic visit. Try to record as much info as you can, and retain it for future reference.

good idea Persephone

by quikjraw - 2020-12-17 03:54:14

That's a good idea Persephone, they are only on my phone at the moment and there is no way I will be able to keep up on my phone if the answer is long.

I've never taken a notepad into a medical appointment before so it will be bit weird !

 

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