Pacemaker Owner's Manual revision

Hi All,

I haven't been on this site in ages. I don't have a pacemaker but I've written about them--a bunch. I used to write pacemaker manuals and over the years I've written patient pamphlets, web content, and other materials on pacemakers and defibrillators. I have a book online called "Pacemaker Owner's Manual" and I am embarrassed to say that it is about 10 years old and starting to get a little moldy! So I decided to revise the book with the latest and greatest and that is why I need your help. I thought a short survey might help me better understand what people with pacemakers might be most interested in or concerned about.

The survey takes about 5 or 10 minutes to complete plus you can also leave a message for me if you want to add anything to this. 

I would really appreciate any input!! Here is the link: http://tiny.cc/uo7sry

(I'm planning on having the survey run about a week or two and when it's done I'll share some of the results with you!)

Thanks!

11 Comments

Survey

by WillieG - 2018-03-15 18:35:37

Thanks and I will look forward to reading what you’ve learned!

Survey

by islandgirl - 2018-03-15 21:32:33

I completed the survey, but there were 2 questions that you were able to mark more than one selection would not allow multiple answers.

Oops!

by pacemaker writer - 2018-03-16 12:06:09

Thanks, Island Girl! The survey had a couple of glitches in it. I appreciate your feedback and also your patience! I am working on getting it fixed and will post a new link later today or tomorrow in case you want to try again. I'm new to the software and I did not realize the error. Thanks!!

 

Survey fixed!

by pacemaker writer - 2018-03-16 16:56:39

I fixed the bugs in the survey on pacemakers and would be very grateful if you would take it. I'm looking for input and ideas. The survey should take you about 5-10 minutes to finish. The link is the same, the survey should work smoothly. Here's the link again:

http://tiny.cc/uo7sry

 

Survey comments

by LondonAndy - 2018-03-17 10:13:45

I have completed the survey but couldn't see how to leave a comment, so posting here instead.  I think publications such as yours are hugely helpful for many people - the most common theme on the forum is anxiety about having a device, which I am lucky enough not to share, and the more 'plain English' guides that people can easily access about what to expect the better.

The survey doesn't really handle my circumstance, where my pacemaker was inserted as a result of surgical complications (damage caused during replacement of my aortic valve with a mechanical one, leaving me 100% dependent on the device).  So I ticked "It has improved my life" because otherwise I would be dead!

A question I have seen several times here on the forum is "what questions should I ask at my first checkup?"  Also, I remember reading in a guide about setting adjustments that can be made to a pacemaker.  BPM and rate response are the obvious ones, but I think it is also possible to adjust the time delay between triggering different chambers, and I would like to (a) understand that more and (b) be able to trial different settings for a week or something to see what effect the change has.  This doesn't seem to be easy to arrange here in the UK!  (In an ideal world I would like to make such adjustments myself, within safe limits, but I suspect that is something I won't be allowed to do).  Finally, there are the new micro pacemakers of course, implanted in the heart without leads, so I am sure you have plans to cover those in your update.  

Some of these comments may be outside the scope of what you are seeking to achieve, but I thought I would mention.

Changed survey

by donr - 2018-03-18 01:45:48

First time  I took the survey it was all about PM's.  Went back after you fixed it & it's all about US politics, including support for Pres Trump.  Not a single word about PM's.

Donr

Donr

by Grateful Heart - 2018-03-18 12:16:25

Try again.  I just went to it and no politics there.  Don't know what you stumbled on.

Pacemaker Writer:  The survey only allows for one response per question.  For example:  Question 14:  some of us were diagnosed with more than one heart problem.  Just an observation.

Grateful Heart 

 

 

No Change

by donr - 2018-03-18 12:26:38

Here's a cy of last time I looked - right now.  No change from US Politics.

"Do you approve or disapprove of the way Donald Trump is handling his job as president?"

GH:  I'm just plain cursed!

Donr

?

by Grateful Heart - 2018-03-18 12:43:30


Did you copy and paste the link or type it in yourself?

Or....you may be right.  One link for us and another for you.  :)

GH

Careful there, GH -

by donr - 2018-03-18 21:57:15

My computer is a bit more modern than the open-toed sandles you use for a "Digital" computer.  I just hovered over the link, left clicked & just like Peter Pan, it took me there - except I went to "Never Land."  Dunno where you went!  I learned that you never smile at a crocodile, among other things.

Don

Well I'll Be....

by Grateful Heart - 2018-03-18 23:56:21


When I hover and click on the link I get something different each time!

You are on to something.

Grateful Heart

You know you're wired when...

Your device makes you win at the slot machines.

Member Quotes

Good luck with your surgery. It will improve life amazingly.