Unanswered questions

Hi guys!

I’ve literally only just stumbled across this site by chance tonight and after reading some public posts, saw how positive everyone was and felt like i wanted to be a part of this group.

I had my first pacemaker fitted 4 years ago but unfortunately had a car accident 11 days later which caused it to tear from the ‘pocket’ so had it repositioned under GA 4 months later. 

I was 29 when I first had it fitted and had no history of any heart problems within the family prior to mine. I’m 33 now and have recently met a new partner who has asked questions regarding my pacemaker and me. I just don’t have the answers. I think as I was so young when I had it fitted, I kind of went along with things rather than asking relevant questions. 

Is my life affected by this? Or am I able to live a normal, full life? Is my life expectancy the same as everyone else my age? What makes me different? If anything? 

Please help me answer some questions that I can’t even begin to answer for myself, never mind anyone else!!

Thanks in advance!

Lou x


4 Comments

Questions

by AgentX86 - 2019-04-12 23:47:23

Only you can say how your life has been altered by your pacemaker.  We're all different and have a pacemaker for different reasons but I know mine makes my life a whole lot better.  ...and I'm still here.

Again, depending on your underlying reason for the pacemaker, your life is likely to be the same as the normal person and is most likely a lot longer than it would have been without it.  It's a win-win.

The *only* thing that makes you different is that your heart needs a little help beating. Some people need a new joint to be able to walk normally.  You're no different.  The pacemaker doesn't define you but it (usually) allows you to have a normal life.  Oh, the other thing that makes you a it different is that you'll need it replaced a half-dozen times during your long life.

questions

by Tracey_E - 2019-04-13 12:57:03

Do you know why you got it? We are the first generation to be paced long term so there aren't really any statistics or studies on longevity, however I've always been told that this will not affect my life expectancy. Wtihout the pacer, I wouldn't have seen my 30th birthday. Getting it isn't optional, if we need it, we need it. You can ask more questions about your condition and your pacer, but they wouldn't have given it to you lightly so you can be sure you need it.  

I am otherwise healthy and the pacer fixes what is wrong with my heart. I got my first pacer at 27. I'm 52 now and haven't had any ill effects. I've killed a few batteries and I can't have an mri (yours is new enough you probably can), I spend a day a year having tests and a check up. The rest of the time I forget it's there and it doesn't hold me back at all.  I'm in the best shape of my life, was at Crossfit 5 days this week then ran a race this morning. 

I have congenital av block which is not genetic so it's not a gene I inherited or could pass on to my kids, no one else in my family has anything like it. I was born without an electrical connection, that's it, a random fluke.  And you didn't ask, but having kids wasn't a problem either. I worked out during both pregnancies, had two normal deliveries. My cardio told my ob that the pacer fixes what is wrong with my heart, treat me like any other healthy mom to be. My kids are both healthy, no sign of a heart condition. 

If you think of other questions, ask away! I'm like you, but fast forward 20 years. :o)

Questions

by Theknotguy - 2019-04-13 21:15:30

Lou:

AgentX86 and TraceyE have given you good answers to your questions.  With the way medical technology is moving, it's very hard to predict the future.  What was life threatening in past years isn't now.  It feels like new advancements are being announced every week.  

I feel two things should be mentioned.  One is you obviously have a much better chance at a long life with the pacemaker than without.  The second thing is attitude.  If you look around the forum you'll see people with pacemakers doing everything that "normal" people do.  I think the only restriction is that I can't get a private pilots license.  (Question: What keeps airplanes flying.  Answer: Money!)  So even if I could get a private pilots license I don't know if I could afford it anyway.  But you shouldn't feel the pacemaker is a hindrance to your life.  I was corresponding with one person on the forum who was doing sky diving with a pacemaker.  They were using a slow-open parachute so it would lessen the shock when it opened.  So I feel the only limitation is your imagination. I don't feel the pacemaker will be a limit to your longevity.  

If you look around the forum you'll see people say they've forgotten at times they have a pacemaker.  I've run into some situations where I've completely forgotten I had the pacemaker and have had some funny things happen.  The shock of, "Oh, yeah, I do have a pacemaker!".  But otherwise I go about a normal life.  Most of my problems post pacemaker implant are due to problems with the broken ribs I got when they were doing CPR.  

So I feel if it is at all possible, that you to go ahead and live your life to the fullest and to tell your partner that no one knows what yours or their longevity will be.  
 

Questions answered! A bit ...

by LondonAndy - 2019-04-14 08:23:39

Welcome Lou!

I got my pacemaker owing to surgical complications when I had open heart surgery about 4.5 years ago, so perhaps like you I did all my research AFTER getting one!

Frankly I mostly forget I have one, and it sounds like you have too, which I think is a good thing.  I agree with the good advice the others above have given.  My comments would be:

Is my life affected by this? Or am I able to live a normal, full life?

Yes, it is affected.  You are still alive because of your pacemaker.  There are very few restrictions - things like contact sports are difficult, and it looks like we can't go on many roller coasters now, if they have magnetic brakes.  We have to go for annual checks on our devices, and get a new one every few years (for me looks like 7 - 8 years life of my first device).  And then every 20 years or more we have to have the wires into the heart renewed too.  There is no escaping the fact that surgery always comes with risks, but pacemakers are incredibly common (more than 40,000 inserted in the UK every year, for example), so all this is routine and good procedures well established.

Is my life expectancy the same as everyone else my age? What makes me different? 

Since you are not going to collapse due to a rhythm failure in your heart at inconvenient moments like driving on a motorway, your life expectancy may well be better than someone who needs a pacemaker but doesn't know it yet. I have been surprised by how many fit people (marathon runners and distance cyclists particularly) post messages on here about their shock at suddenly finding they needed a pacemaker.  But I don't know any more than that.  There are plenty of other variables in life that affect how long we will live, and whilst it is sensible to seek to minimse risks there is not much we can do about our need for a pacemaker.  

You know you're wired when...

You trust technology more than your heart.

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