Pacemaker 101 - Great Resource

Excellent link and good resource

by Gemita - 2024-05-17 15:06:58

Thank you for the link Andiek.  I will add it to my reference files, although I think it is already there.   I agree it is very well laid out and an excellent reference guide for all things pacemaker related.  It has some excellent diagrams too which really help.

Aren’t we lucky we have got the University of Google at our finger tips.  I am also a student there and have been for years.  Even at 75, there is always more to learn.

Tech Degree

by Penguin - 2024-05-17 16:15:20

I must admit Andie, that it seemed to me that you already had the tech degree ... and some! 

Excellent resource. Tell me, do you think it's helpful for patients to learn all that they can about their devices from online resources or rely on their doctors and techs instead? 

Penguin

by Andiek11 - 2024-05-17 17:09:17

Interesting question.  Lemme pull over my soap box....  *haha*

 I don't see it as, "either-or."   First off, I won't have the opportunity to ask my questions for another 10 weeks.  (I hate unnecessary waiting... )  Second my personal plan is to take the info I've learned and then to review with my cardiologist at our 3 mo appt as for accuracy and understanding.  One could argue that to have information without someone to fact-check it could create more worry.  But then again one can also argue that being left to make-up our own answers based upon little or no information can create just as many or more problems.  

I don't pretend to know more than my doctors. (some of the nurses, most likely, but I'd hope not more than my doctors!!)  But I want to be able to have an intelligent, informed conversation about my heart, the operations of the pacemaker, and if necessary use my knowledge and questions to help others think outside-the-box if necessary.  This is who I am.

To date, my team has been great at throwing about tech terms and not asking if I knew what they were talking about.   In most cases I was able to sort it out quickly in my head and then give them back a "plain speak" version that was usually accurate.  My experience is that few professionals seem to take the time to bring their customers fully into the conversation.  Just my experience.  When I can go in and trade jargon with them, I find I get much more effective communications.  (Granted that are many other skills that also go into having an effective communication, but the above is a very surficial overview.) 

Really the bottom line is this....  As a consumer / patient I can only make the best choices I can given what I know at any given point in time.  I have to live with my choices - even if I follow every direction to the letter.  The docs may feel bad that something didn't work, but they don't have to live with the consequences.  So if I don't make myself an active participant via getting the education I need when I feel I need it, I'm really out on a shaky limb.

Okay, putting away my soap box now..... :-)

Gemita

by Andiek11 - 2024-05-17 17:10:48

Ach!  I didn't think to check out the resources posted on the site.  Thanks for reminding me that I don't always have to recreate the wheel.. :-)

patient-doctor relationships

by Gemita - 2024-05-18 05:56:14

Yes knowledge is power, but be careful what you are asking for sometimes.  More help in the form of more meds, more interventions, is not always the answer either and sometimes leaving well alone is a reasonable choice too.

I see some folks wanting more from their healthcare teams, more from themselves, never being entirely satisfied with any outcome.  With each successive intervention, their symptoms have sometimes worsened, symptoms that might have resolved without intervention.  The body can heal itself if the right conditions exist and time can be a great healer. 

I did a post about a year ago on patient-doctor relationships and I attach the link, since I feel it has a place in this thread.  One member wondered if patient Google-knowledge is counter-productive and possibly leads to the patient talking too much rather than listening.  I have been guilty of this many times.  Most consultations in the UK have time constraints anyway and achieving the maximum benefit from my appointments is important, so I try not to go to appointments with too many questions.

The second link is an excellent British Medical Association doctor-patient-relationship-toolkit.  It is worth keeping in a safe place.  Although written for our UK NHS patients, it will be valuable, I think, for all members wherever they reside.

https://www.pacemakerclub.com/message/43259

https://www.bma.org.uk/media/7051/bma-the-doctor-patient-relationship-toolkit-final.pdf

Angry Sparrow and Gemita

by Andiek11 - 2024-05-18 09:44:50

(Love the convesation!  Thanks for allowing it to flow naturally)

There is an addage I learned a while back that to me is a critical underpinning to having effective communication.  It goes something along the lines of... To be Understood, First you Must Understand...

Care providers of any background are all unique individuals just as are those who are consumers / patients.  Some are better at understanding and making themselves understood than others.  Just real life.  However, the one factor that any of us are a fair degree of control over is how we communicate, how we both send and receive information.  Are we careful listeners?  Do we enter a diaglogue with a closed or open mind? Can we be respectful in our tone and word choices? Can we accept that even when we do our best, that a communication might still not go as we would have preferred but that doesn't mean people are bad, stupid or useless.

A personal example of communication gone bad in a totally separate stream of life, I broke my foot last Xmas eve and was under the care of a very well qualified orthopod.  However 16 weeks into what should have been about an 8-week healing process, healing had barely started.  I was frustrated.  All I kept hearing (after the first 8 week mark) was that it would take time, to stay the course. I asked if we should re-cast the foot?  Were there other things that could be done to speed along healing?  I received responses of rolled eyes and frustrated scowls.  The final straw for me was reading the NP's note from my April 1 appt that stated that 'patient was frustrated that healing was taking too long."  100%  incorrect.  I was frustrated with not being heard, with my questions appearing to be dismissed.  My bones will take what they will to heal, but I was not being unreasonably frustrated at the 16 wk mark.  I chose to change providers / practices.  I returned to a podiatrist that I had seen in years past for some foot surgery.  He listened carefully.  I was respectful and went out of my way NOT to bad mouth my former team.  The podiatrist presented me with a plan of how he would have approached the case that made sense to me, and he reassured me that options to speed along healing were indeed out there  (even with a pacemaker) and available, but he'd like to see how his more conservative approach of recasting the foot went first.  Made sense.  I agreed and switched to his care.  I'm now four weeks under his care and my foot is about 50% healed which is about 49% more than had happened in the prior 16 weeks of care.  Was the first provider an idiot?  Nope.  But his communication skills fell off and I needed to do what I needed to do for myself. 

(And on a funny note, between a casted left foot, and restricted movement of my right arm because of pacemaker, my life these days is at once funny and frustrating at times. Imagine trying to start the gardening season like this... *lololol*  Part of my foot frustration was that this could have been well done prior to pacemaker implant which could have made my life much easier now. But it is what it is.  ;-)    )

Gemita - Thanks

by Andiek11 - 2024-05-18 09:45:45

Appreciate the excellent links you share.  Many thanks!!

Knowledge

by AgentX86 - 2024-05-20 00:34:47

Andiek11: You're exactly right.  We have to learn a little to be able to converse with our doctors.  They're far more willing to discuss exactly what's going on (and give more time) if you make some effort first. If for no other reason, people like to talk about their jobs.  In this case, it shows that one is taking charge of their health. Right or wrong, they tend not to spend a lot of time with patients who don't care about themselves.

Without information, informed consent isn't possible.