Pacemaker dependent

Great question - anyone in the Club?

by Gemita - 2023-01-21 15:44:07

Nina, great question.  I see the same question was asked in 2008 on the Pacemaker Club and I think this would make a very interesting Poll question in the future.  I see member Gellia2 has had a pacemaker since 1975 when pacemakers were still relatively new. Gellia2 has been totally PM dependent since, getting her first dual pacer in 1982, again when they were first new to the general public. She had years of continual right heart pacing with relatively few problems I see.  That is really reassuring since we are always worrying about right ventricular pacing and heart failure.  I do not know if she is still with us?    Anyway, have a read of the attached link:-

https://pacemakerclub.com/message/2124/longest-one-has-lived-while-pacer-dependent

I am not pacemaker dependent and have only had my pacemaker for around 5 years (in May 2023).  I am doing very well, thank you and I hope you are too?

Wow that’s great to know

by Nina38 - 2023-01-21 21:16:26

Thank you so much for replying... I am glad to know you are doing well.

I have been a pacemaker dependent since 1988/1989...I was 4/5 years old... and I sometimes wonder who else has been a pacemaker dependent for as long as I have been and beyond. 
 

I will admit, it frightens me a bit the more time goes by... but at the same time I remain hopeful for our future and I am grateful for life. 
 

Pacemaker and your longevity.

by Selwyn - 2023-01-22 18:29:45

The following answer is a year out of date:

The longest working pacemaker (present day) is 37 years 281 days and was achieved by Stephen Peech (UK), as of 7 June 2021. The pacemaker was implanted on 29th September 1983, at Killingbeck Hospital which now no longer exists. As of achieving the record, Stephen is 75 years of age.

One cardiologist has reported a patient with a 48 year history. 

In general, a pacemaker is said not to alter your life expectancy.

long time

by Tracey_E - 2023-01-22 20:26:24

I've been paced 28 years. There are a dozen or more members paced as long as me and a few, including Gellia, who are at 40+. I have been told consistently by every doctor I've ever had that pacing does not decrease expected lifespan. My generation is the first paced from early adulthood, yours is the first paced since early childhood, so there is not a lot of data for us to go on.

If I'd been born the same year as my mom, I would not have seen my 30th birthday. Technology is amazing! Not only am I still here, but I'm healthy and active. The pacer does'nt keep me from doing anything I want to do.

Thank you for sharing

by Nina38 - 2023-01-23 14:47:02

Thank you Selwyn and Tracy_E.

Its brings me comfort knowing there are others with a pacemaker longer than me. 
 

I have learned so much from so many while on here.

thanks and be well everyone!

not alone

by Tracey_E - 2023-01-24 09:38:38

I was diagnosed in 1970 at age 5. I was the youngest at my cardiologist's office until I was 40 and he had no one else like me. I never met anyone else like me until I found this website. What we have is pretty rare, so it's great to be able to come to a place like this and where we are perfectly average. 

I see an adult congenital cardiologist now. I highly recommend that for you as you age out of peds, don't go to a regular adult cardiologist/ep where they don't have other patients like you. Adult congenital clinics are getting more common so they're easier to find, and the care is night and day.  I got good care at the cardiologist I saw for 20 years (and still regularly recommend. He's great, just not great for me) but the adult clinics see others paced for a lifetime and have a better grasp of what that entails.