How did you find this site?

As a new pacer and new club member, I'm curious how other members found this site. I had my PM implanted on July 8th and have had what I thought was random episodes of PMT.  Several visits to my PM team and a few reprograms didn't help. I started keeping a log and soon realized my episodes were occurring every 21 hours at the 56th minute of the hour, then again 5 minutes later at 1 minute past the hour. I did a search on Perplexity and one hit was a PMC member who was having the same symptoms but at the 41st minute of the hour. After joining PMC another member (Rch) gave me an answer, turns out to be several tests that Boston Scienctific PMs do every 21 hours, he advised me to download the PM manual (the one intended for the doctor) which I did and I found 11 hits in the manual for the 21 hour tests. I go back to my EP in two weeks and I'm hoping she can prescribe some reprogramming that can make the episodes gentler because they are uncomfortable. One plus is that I can set a clock to the second by when the episodes occur. Anyway, I find this site to be very informative and am thankful to be a member.

7 Comments

how i found this site

by new to pace.... - 2024-10-01 18:39:53

Welcome to the club you did not want to belong to.  I found this site in 2019 by searching  for pacemaker.  As i did not anyone to ask about the pacemaker.  Many on here on quite helpful.

new to pace

The site

by Lavender - 2024-10-01 19:48:46

As soon as I got home from the hospital visit to get my surprise pacemaker, I googled "pacemaker". That led me here in 2021. I read the site for 16 months before joining. I hadn't joined the site, because I felt like a real novice, and certainly was too new/traumatized to help anyone much.

I had a lot to learn and needed knowledge to calm me down. Like new to pace, I had no one to ask in my real world. 

Pre-Planning

by Andiek11 - 2024-10-01 20:39:57

As soon as it became evident that a pace maker was in my future and the type of pace maker they initially thought they'd install, I immedately started to do some research on patient resource sites.  Pacemaker Club popped up and while intially I was a bit skeptical, I quickly discovered an almost bottomless source of dang good information, recommendations and cammorodity!  I have not looked back since.  Don't think I could have navigated my PM experience as well as I did if not for the many caring, compassionate and knowledgeable  members here. 

Very informative

by karensoftball - 2024-10-01 22:39:25

I discovered this site years ago during an Internet search when I was first diagnosed with heart block. I learned a lot that evening! That doctor did not help much with my questions, I had never heard of heart block before that day so I had plenty of questions.

After reading through a bunch of stories I wanted to feel better and get a pacemaker. But it took years and a couple hospital changes to get that done.

Very grateful for this site.

Boston Sci Auto-calibration runs 8 times per week == every 21hrs

by crustyg - 2024-10-02 03:31:24

The logic is that it prevents waking patients up every night if the auto-cal is being felt.

What the PM is doing is checking that the pacing output voltage is reliably triggering heart muscle contraction.  Obviously this can't be done by using a low voltage and increasing, so it starts with a high voltage - which many patients can feel.

You will probably have to convince your EP-team to disable auto-calibration if you can feel it and it's uncomfortable.

I hope you are able to have a meaningful conversation with your technicians/EP

by Gemita - 2024-10-02 04:14:15

PortCityPacer, firstly a big welcome. I found the Pacemaker Club by searching the internet too, although one of my doctors knew about this site and mentioned it as well.  I know we get clinicians (like radiologists, cardiologists, cardiac physiologists, MRI physicists) for example visiting us, and we have active members too who have worked, or who currently work in the medical field.

I live in the UK and attend a main London hospital.  The Pacemaker Club has got a good mix of members from all over the world with very different health care facilities.

Yes I too find this site exceptionally valuable, with caring members who have become my friends. 

Before joining the Pacemaker Club, I also looked at a few Facebook sites which were much faster moving, with far more views and responses than you will normally see here.  However the responses to the questions posted on these Facebook sites were often all too brief in my opinion, leaving me wanting to know more. 

The level of support and information given here is often so detailed, so complete, which has clearly taken the member a great deal of effort and time to prepare.  The “complete” feedback offered here helps us to have that meaningful discussion with our health care teams, a discussion that most of us would otherwise find so difficult in such a complex area like Electrophysiology.    

Google

by piglet22 - 2024-10-02 05:40:34

One of the great things about search engines - love them or hate them - is that it finds sites like this.

I can't remember the reason about 14 years ago, but probably an interest in my condition and what the device was doing.

Left to the hospital, I would know next to nothing, other than I had heart block and the pacemaker made me feel better.

Just as well my PM is safely out of reach or I would be in pieces on the bedroom floor. I have that annoying desire to take stuff apart.

As for the site itself, you do feel that you are talking to friends who share your problems and you aren't on your own trying to get information.

Some patients are happy not to know anything about their devices, others do.

Anything that that has kept me going for nearly 20 years deserves some interest.

As a complete aside, I was shocked to read a news item on the hospital that I attend, a surgeon had used a Swiss Army knife to operate on someone because he couldn't find a scalpel.

Pass me the Stanley knife nurse.

You know you're wired when...

You can hear your heartbeat in your cell phone.

Member Quotes

Try to concentrate on how you’re able to be active again and feel normal, rather than on having a machine stuck in your body.