Newly fitted pacemaker

So I’ve recently yesterday had a new pacemaker inserted after having one put in 9 years ago nearly at 20 years of age , after giving birth to my daughter 14 weeks early due to mySelf apparently being born with congenital heart block this was the only option I had . I have a son also who was born before our daughter who was 6 weeks early yet this was never picked up on even know my pulse was low . I have spent all day in agony after yesterday and become extremely anxious about how long I have left to live as I have complete block so depend on a pacemaker and I keep reading that you can only have 2-3 pacemakers does that mean after my next one I will die ? I’m just 29 and yesterday on the entire ward I was the youngest there I’m grateful for it as it keeps me alive and I can watch my children grow up . My daughter saved my life , although I cannot help but live with guilt for the problems she has herself because she was born early , and not breathing and herself suffered a bleed to the brain . She is now nearly 9 and she is our little miracle she is inspiring and always happy takes all in her stride , I hate to keep thinking that I may not be here to help her ? Someone please clarify if a pacemaker is life long how long is that ? How many can u have ? With thanks in advance 


8 Comments

PM replacement

by Electric Elise - 2018-11-28 19:02:57

Hi Freespirit, i know you must be going through a whirlwind of emotions a day after your PM replacement, but at least rest assured that you can get more than 2-3 pacemakers during your lifetime. Say you’ll live to be 100 and say you’ll need to change your PM every 9-10 years.. you’ll get 7 more. I’m 36, on my first PM and, like yourself, will have to get it replaced quite a few times. I know the procedure is a pain in the arse, but you’ll go through it and live to be around your kids and watch them grow up for a loooooong time. 

Hope you heal quickly after your procedure and get back into the swing of things in no time!

Re thanks

by FreeSpirit - 2018-11-28 19:09:14

Hi, thanks for your message that has put my mind at ease . Tiredness and emotions aren’t a great mix but thanks to yourself I may get some sleep tonight 😉.  

Aww!

by Electric Elise - 2018-11-28 19:13:58

Cheers for saying that, i do hope you’ll relax a bit now and get some well-earned rest. And keep us posted on your progress! Much love, E.

Freespirit

by Benjijohn - 2018-11-29 01:22:50

as previous messages explain, you can have many many more pacemakers than 2-3 in todays world

In additin, I just wanted to point out that science is improving everyday. You are very young and I am sure there will be new techniques that will make all our lives much easier in the future

Thanks

by FreeSpirit - 2018-11-29 04:59:34

Thanks for all the comments . I was having a down day yesterday everybody has them which is completely normal today I am feeling a lot more positive and of course Im thankful for having it , it is keeping me alive. Being young and fit good at sport I just found it hard to accept that I was born with it so recently started trawling the net for answers which someone said isn’t the best idea but we are all guilty of it . Nothing was really explained about it and then when I heard someone suggesting recently u can only have 2/3 sent me in to panic mode . Medical science nowadays is an amazing thing I’m in extremely grateful for that . A diary of feelings as a good idea , although I’m normally fine and a positive person just having it changed I guess has brought new and old emotions to the surface again but not for long 😉 this forum seems like a good place I only came across it last night and was intrigued . 

how many is too many

by Tracey_E - 2018-11-29 08:45:35

I was in your shoes once. I'm 52 now, my kids are in college, and I'm on my 5th pacer, healthy and active and in the best shape of my life.  I have never once been told this will shorten my life. I've been told just the opposite, that my problem is fixed, go live my life and don't worry about it. If anything, we are more conscious about our health and better monitored so if something else comes up down the road, we're more likely to be on top of it. Guarantee my doctor is less worried about paced me than my overweight couch potato husband.

They can replace the box an indefinite number of times. Leads are the potential hassle, they last on average 15 years and our veins can hold usually 3 before we run out of room. After that, they can either extract and start fresh or move to the other side. I've been paced 24 years. One of my original leads still works great, the other was replaced in 2011. I had room for a third so they capped off the old one and added the new one. My xray resembles a bowl of spaghetti and meatballs. I alway joked about that, but recently saw my xray and realized I was right on! So I posted it in the gallery. 

When I had my last one, I was by far the youngest there and still had lots of "wow you're so young" comments.  So, heads up, you've got a lot of years of "young" comments ahead of you. Tune it out, that's just ignorance. Yes, many problems fixed with a pacer are brought on with age but there are a lot of us congenital, blessed to be born in an age when it can be fixed. 

You can be the worlds biggest optimist but still have down days. We all do, it's ok. Take some time to heal both physically and mentally, then make the choice to move on. You got this. And you're daughter will have you. 

Great too know

by FreeSpirit - 2018-11-29 16:26:14

That was lovely message to read and gave me great comfort in knowing it’s possible to have many . Having a pacemaker has definetly improved my life and gave me much more energy then I’ve ever had, I’m looking forward to what the future holds and after recovery from the recent op enjoying feeling myself again . And your completely right we’re only human everyone has a bad day now and again . Some lovely people on here I didn’t realise how many people all over the world have pacemakers they have saved so many peoples lives x

In the same boat

by MAPacer - 2018-11-29 21:23:34

I just got my pacemaker 3 months ago and am still trying to wrap my mind around it mentally.  I have been assured by numerous people including doctors that I will live a normal life.  I was diagnosed with complete heart block.  I am 50 y/o.  Look at it this way; you will probably live longer because of the pacemaker ;O)

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