Discussion Questions

Suggestion

by Penguin - 2023-07-12 11:03:28

1. Understanding Causes / Symptoms / Solutions to Possible Pacing Issues: Oversensing, Undersensing, Pacemaker Mediated Tachycardia / RNRVAS, Upper Rate Issues

2. Arrhythmia and what your pacemaker can / cannot do to help.  Pacemaker terminology and what it means e.g. AT / AHRE / VT / VF / Mode switch etc Common types of arrhythmia and what your pacemaker can / cannot do to help. 

3. What to expect from a pacing clinic appointment - basic checks, available data, information re: any changes to settings, reports that the device can generate to inform your care. 

4. New Innovations / Improvements to Settings / New Models & Features - Perhaps pacing reps would like to contribute with this information? 

Suggestion

by H van Dyk - 2023-07-12 12:35:22

I agree wiith member Penguin. Would like to add something like: "Pacemaker in the news" plus other new or interesting media reports.

I think a FAQ list here would be very valuable

by crustyg - 2023-07-12 12:41:58

People's ability to absorb information under stress is limited.  Sit in a clinic where a patient is told that they have 'Cancer' and they hear nothing else from then on - which is why good clinics have leaflets/handouts for the patient (and family/support group) to read later.

Therefore I don't think that there's a lot extra that a busy EP-doc should tell their patient, except to reassure that simply having a PM doesn't restrict your lifestyle in any way (except for a very few occupations).  Finding a community like this with a full FAQ list is probably better than any clinic handout.  I suggest that it includes the FDA recall site (and how to navigate it) and, perhaps, links to, or even copies of (might be an issue) the device manuals.

And (and this applies to me too), for those of us who don't have CCHB, it's worth remembering that the disease process that led us to need a PM (or ICD) in the first place is likely to be progressive.  Time changes everything, eventually.

The metaphorical heart

by Gotrhythm - 2023-07-12 12:54:53

There's a sublte but pervasive disconnect between the medical/technological understanding of heart arrythmias and the patient's, because for the medicos, descriptions are separate from any emotions/feelings but for the patients, it can never be.

If you doubt me, think of all the words for emotions and character descriptions that include the word heart. Hard hearted. Soft hearted. Down hearted. Light hearted. Heavy hearted. Broken hearted. Cold hearted. Wholehearted. When we speak of an essential character trait, we say "At heart, he is ____." "In my heart, I feel ____." 

To explain emotions we ascribe physiologically impossible movement to our hearts. Disappointment. My heart fell. Anticipation.My heart was in my throat. Compassion.My heart goes out to them. 

And of course, there's always the complex message of the song from "Damn Yankees," "Ya Gotta Have Heart."

You can add many more.

If the heart is not just an organ but a metaphor for many complex blends of ideas, beliefs, and emotions, can we be surprised if people have depression, anxiety, anger, confusion and other complex emotional responses to getting a pacemaker?

I don't fault the medical community because the emotional consequences of pacemakers go unaddressed. How can a doctor be responsible for a metaphor? But the connection between heart and complex emotions is real and pervasive, embedded in our language. I think discussion here would be fruitful.

Members with a gift for putting things more simply than I do, could probably frame the questions better than I.

Discussion questions

by Good Dog - 2023-07-12 14:26:05

I can think of so many potential questions that it could make for an overwhelming task putting it together. One thing that would be really important to me is:

A reference list of PM specific abbreviations and acronyms incl short explanation

Abbreviation lists improve readability, minimizing confusion about abbreviations unfamiliar to the reader. I don't know about anyone else, but I often struggle with some abbreviations. i.e. common ones; HF-heart failure, EF ejection fraction, CCHB congenital heart block, etc, etc, etc

Good Dog

by Penguin - 2023-07-12 14:55:01

If you look under the tab 'Learn' at the top of the page you will find a link to 'Abbreviations'.

This might be what you wish for! 

Great feedback everyone

by Gemita - 2023-07-12 15:31:49

Actually doing this post has made me realise that there is much more available under Learn-FAQs than just Club information.  There are lots of other categories too if we click on Club Information, then scroll through to a category of our choice, then click red box Choose Category to bring up that category, for example coping, device info, implantation, interferences, life with a device, pet pacemakers, statistics, the heart, the pacemaker/defibrillator, but it could still be expanded

Questions for Discussion

by Flo - 2023-07-12 16:22:28

How about:

if you have a choice, what to look for when selecting a Cardiologist/Electrophysiologist (other than are they in my insurance network)? 

Penguin - Thank You

by Good Dog - 2023-07-12 17:12:53

As Gemita said, there is much to learn under the "learn" Tab.  In all the years I've been hangin around here I don't think I ever once looked under that tab. One might believe that I think I know it all!  Well, please allow me to disabuse you of that thought. I wish I knew half of what some folks around here know. I suppose that I just need to be more inquisitive though!  

Thanks again Penguin.....

Dave

Penguin

by Gemita - 2023-07-14 04:14:37

Penguin: your post has given much food for thought and all four suggestions will provide hours of discussion topics.  I have also received private feedback about getting manufacturer reps, technicians, even EPs involved in “Ask the Expert” sessions.  I suspect setting something up like this won't be easy but if we never try, we will never know what might be possible.  I believe several members here could also help with any discussion sessions, since there are many with experience and knowledge working with their own settings and who better than the patient to know what is best?

H van Dyk

by Gemita - 2023-07-14 04:15:54

H van Dyk:  yes new pacemaker technology is something important to all of us as we start our journey with our pacemakers which will require battery, possibly lead changes during our lifetime, perhaps upgrades as our heart condition changes over time.  Leadless technology for example is an important area for development.  Experts at my UK hospital for example have implanted three leadless heart devices in one patient in a world first, so we need to keep learning about important research and development.

crustyg

by Gemita - 2023-07-14 04:19:59

crustyg: your comment about difficulty in absorbing information when under stress is one that resonates with most of us when faced with a new disease or medical condition.  It is a sobering thought that the condition that led us to needing a pacemaker or ICD in the first place is likely to be progressive over time, although of course there is still a lot we can do to slow down this progression through lifestyle changes.  A go to place for support information is so important and I feel our FAQ list should be more prominently displayed, more accessible for newcomers.  It already contains a lot more information than I realised but we could still do better.  I would like to work on the FAQ list if I am allowed, although a massive undertaking I know

Gotrhythm

by Gemita - 2023-07-14 04:23:16

Gotrhythm:  The Metaphorical heart.  I suspect it will be difficult to select only one title for such a lively discussion but what an exciting prospect. I could suggest almost anything from “a broken heart”?, to “will I lose heart”?   The connection between complex emotions leading to heart arrhythmias and other diseases is most definitely a real one and a subject that comes up time and time again.  Questions on healing the heart emotionally following pacemaker implant will never die 

The Metaphorical heart. The spark of life, fount of emotion, house of the soul - the heart lies at the centre of every facet of our existence.  It’s so bound up in our deepest feelings that it can physically change shape when we experience emotional trauma . . . Sandeep Jauhar’s book, Heart:  A History that talks about the metaphorical heart.

Good Dog

by Gemita - 2023-07-14 04:26:10

Good Dog:  I note you can think of many potential questions that could make for an overwhelming task putting it all together.  I understand your concerns here, but my post is just about ideas for potential questions and you know I am up for the challenge!  Your suggestion of an abbreviations list for example has already provided clear benefits in locating such a list and helping to navigate this site, so just keep those questions coming in please.

Flo

by Gemita - 2023-07-14 04:35:10

Flo:  “What to look for when selecting a Cardiologist/Electrophysiologist” is an excellent topic for discussion and an important one for all of us.  Having a caring doctor who is willing to spend that extra bit of time with us to explain the reason for our pacemaker can make such a difference to the eventual outcome and help healing to take place. 

Received from SeenBetterDays (posted with her permission)

by Gemita - 2023-07-14 06:15:44

I don't really have anything specific to add other than wouldn't it be great to have an "Ask the Expert" session every now and again where someone with specialist knowledge could answer some of our queries.  I don't know if I am probably living in a fantasy world where electrophysiologists have bags of spare time to devote to the Pacemaker Club but it would be so helpful, especially as we often have recurring questions where a deep dive discussion on a particular topic could be of huge benefit to members.  

It feels as though a lot of us follow a similar path of confusion when we become pacemaker recipients and are most likely all duplicating our research to learn more.  It would be great if all that knowledge was easily accessible in one place and in terminology which is understandable and aimed at patients rather than in technical jargon.  Again, very difficult to achieve but in an ideal world would be fantastic.

Ask the electrophysiologist

by AgentX86 - 2023-07-14 17:29:36

It would be great but, other than finding one with free time, I see a lot of other problems here.  First is the liability problem.  We aren't patients so avoiding a diagnosis may be a fine line. 

There are tons of other similar issues but one we don't think about much when we see our cardiologist is that he has no idea what we're asking or telling him.  He hasn't been where we are. He has no direct experience with pacemakers and, in most cases, no experience at all. He just tells the tech to set some timings and that's all he knows. He knows how to install a zipper, do some electrical work, and he's off. Cardiologists/EPs are (mostly) great at what they do but they don't have any experience with the other end of the scalpel.

Enough of windy road to my point: wouldn't it be great if your cardiologist hired a PA of NP who actually had a pacemaker?

AgentX86

by Gemita - 2023-07-15 05:37:49

I understand completely what you are saying that unless a member of the cardiac team has a pacemaker or ICD themselves, they cannot really appreciate all the potential symptoms and sometimes difficult emotions a member might have to go through as they start their pacing journey.  

If we could find a professional willing to join us occasionally, that would be nice and I would be more than happy to work with say a retired Cardiac Technician who is highly qualified, rather than a Cardiologist/EP who just wouldn’t have the time.   We could ask questions about his past work in general, what he looked for when he reviewed a patient and what triggered a settings change and things like this.  

None of us would expect a personal diagnosis or opinion for any of our symptoms and any questions put to a Cardiac Technician could be carefully selected beforehand to avoid putting him/her into a difficult position.  

Of course we have our own members too who have extensive experience and knowledge working with their own settings, who could help answer many technical questions on pacemakers and their settings.  Indeed they are already doing this when questions come up.  All I am trying to do is to see if there would be interest in getting something set up regularly for discussion, when we could all show up and comment on a topic of interest?  Conversations can last over days as they do now, whenever individual members have the time to check in.  I just want to try to make the Club more helpful to more members based on what they have been telling me.  

So AgentX86, what would you like to see discussed more frequently?