Looking for advice

Hi all,

I have stumbled across this site and was wondering if I could post a question.
I am 33 and my partner has had his pacemaker for just under 2 years. I am also in my final year of studies to be an occupational therapist and we have been tasked with a project to find a gap in health and social care and develop a product that will enhance service users experiences. Based on my partners personal experiences we feel there is not a lot of readily available information for young working adults about living with a pacemaker and want to develop a new concept of a mobile phone application that would give service users instant access to information in a modern and up to date format. We all use our mobile phones for everything and think this concept could have potential. Obviously this is only an idea in principle but we are looking for a few people who would be interested in talking to us further about our project and to share some of their views and experiences.
I would be most interested in any of your views and would be delighted if anyone would be interested in speaking with us as a group of students in a bit more detail.

Sue x

4 Comments

App

by golden_snitch - 2013-01-07 03:01:41

Hi Sue!

What exactly do you think this app should inform us about? I am a young (31) working adult with a pacemaker, but I really cannot think of anything this app could provide me with. There are very few restrictions for pacemaker patients, and things like staying away from an MRI (if you do not have a MRI-compatible pacemaker) I can easily remember - no need for an app to tell me that. And why do you underline that it should be for the "young working" pacer patients? That indicates that you think there are information about pacemakers out there that are not of interest for elderly pacer patients or for kids. Again, I wonder what kind of information you mean.

Maybe you can give us an idea of what kind of information this app shall provide.

Best
Inga

Hello Sue

by IAN MC - 2013-01-07 03:01:50

I hope your partner is doing well with his pacemaker.

Certainly some people with PMs are hungry for info which is why this PM club is so helpful . Usual sources of info are leaflets/ instructions which are given on leaving the hospital and then subsequent discussions at the regular PM checkups ... then of course there is all the online info which is vast. A mobile phone app could be a useful addition.

When you say " we all use our mobile phones for everything " I think you are referring to your age group. I suspect that the over-sixties who represent a significant proportion of PM patients are less likely to view their mobile as their first method of obtaining info. BUT this could well change with time.

I, for one, would happily help give you feedback.

Best of luck ... nice idea !

Ian

App

by Sue79 - 2013-01-07 04:01:24

Thank you very much for your comments Inga and Ian. This is exactly the sort of advice and feedback we are looking for. My partner is 33 and we have found it very difficult to find specific information all in one place that is relevant to our needs and concisely explained aftercare and how to cope with complications, plus in our search we often stumbled across websites that explain how the American health system works. Inga, I completely agree with your comments because most of the information available is relevant to the younger population as well, but from our experience the information that is available is mainly aimed at older patients. We have also found some really useful information for children, but we were looking at providing information that is targeted to a younger adult population. We thought a mobile phone app would provide another form of media in which to give people access to information. We have had some difficult and unhelpful care from hospital workers who made very unhelpful comments like - "we are not used to someone so young and why are you here - you look too young". Also the type of questions my partner had straight after the op was, when can I resume my usual exercise routine. How will this affect me at work as I am often required to lift very heavy objects. There were also little details such as how pacemakers are affected by electrical items like induction hobs and questions around going onto theme park rides etc. These are all small little questions that we have of course found the answers to but none of this information is all in one place.
Please keep your comments coming as we really want to get a broad prospective on our ideas and develop them in response to peoples advice.
Ian I would be most interested in your feedback once we start to develop our ideas a bit further. Thank you very much.
Sue

Questions ???

by donb - 2013-01-07 10:01:13

Hi Sue, I gather that the service you long for has a very good source in just using this site. Because of fear from Liability to hospital care givers, all level of Drs & even most of this membership, most information is from personal experiences only. Going back into this site with thousands of posting experiences & questions will probably give more information than any other source.
Having been a PM patient for over 20 years with 5 differant pacemakers, 2 pairs of leads, both sides left & right chest sites used has not been without (bumps in the road) of pacemaker life. The do's & dont's of having debices are unlimited as each individual patient differs, there just are not any rules "cast in stone". Being 81 this coming Sunday I could list lots of advice, but again that would pertain to my body. So, we are not Drs, Surgeons, Medical technicians, nor is my retired Cardiac Nurse (wife). She just tells me to go find a better care giver. That is the #1 priority of info for any & all upcoming PM patients. Please don't take this negatively as I believe you have a great plan if you can get a Fits All program with accurate up to date information.
Thank You Sue !!!
DonB

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Member Quotes

I've seen many posts about people being concerned about exercise after having a device so thought I would let you know that yesterday I raced my first marathon since having my pacemaker fitted in fall 2004.