Wanting someone to talk to that understands

Hey I'm Helen twenty nearly twenty one had my pacemaker fitted recently after passing out since the age of thirteen I never thought anything of it until October last year it caused me to crash my car since then I was under going investigations for epilepsy the tests came back negative this dis heartened me as I still didn't know the cause and I was passing out at least three times a month if not more which it was beginning to affect my life more and more neurology then passed me to cardiology who did a 24 hour tape this showed I had an irregular heart beat which because it stopped between 3.2 and 3.5 seconds at a time caused them to want to do more tests I then had three blackouts within a week and my gp admitted me to hospital over ten days I under went tests and was hooked up to a monitor at all times which showed a had a secondary heart block which with careful discussion due to my age my consultant and doctors decided that I would infact need a pacemaker which I wasn't expecting and took me time to come to terms with infact I still don't think I have but I'm just happy that this should stop my blackouts and that I should be able to get out with my life without worrying. Just wondering how many people my age have pace makers all the people on my ward were the older generation which helped knowing people going through the same thing but I'd feel even better if I had people to talk to my age that understand because even though I've explained friends they don't seem to understand like someone who's gone through it themselves same as anything really you don't know properly unless you've been there.

8 Comments

Hey!

by MannyOWar - 2014-04-16 05:04:03

I have had open heart at 3 months and 18 months and have had a pacemaker since I was 5 years old. I'm now 33. My life is really normal. I'm a lawyer. I go to the gym 5 times a week. Everything is fine.

Pacemakers are brilliant devices that need little to no attention. You will probably never forget that it's there but you will learn the different feelings and sensations that a pacemaker will bring.

And most importantly, you will be HEALTHY and live a very long and healthy life thanks to this genius little invention.

Feel free to ask anything you want.

Hey welcome!

by cheshirealice - 2014-04-16 05:04:32

I had open heart surgery at 10 months old and I've always seen a cardiologist. Every year I had a Holter Monitor that I would wear while I was sleeping and my heart was stopping longer and longer as the years went on (up to 5+ seconds). Five days after graduating high school (at 17yrs old) I had a second open heart surgery with a PM placed. It was weird to think I had a pacemaker but I realized that my heart wouldn't stop while I slept and never start again. I've never had anyone think differently of me and the guys in college thought it was cool. I've noticed when I go clubbing that I can't stay next to the giant bass speakers or my pacer beats to the music. I haven't had any passing out spells since the PM was placed and exercise is easier for me. I am now 27 years old and on my third PM.

Let me know if you would like to talk more. I'm glad you have a PM because you're going to be okay now.

-Erica

Hi

by Pacemum - 2014-04-16 06:04:43

My daughter has been paced since she was a few months old and lives life to the full. She is now 14 and on her 3rd PM.

It depends which clinic or service you are being treated in as to the age of the people or children you will see. If you are in the general service then the age of the people you will see will be older. The congenital heart service has a mix of ages.

You're not alone Helen!

by wingwang - 2014-04-17 12:04:12

Hi Helen, i am 38 and just had my dual chamber PM 1 last month. I know what you are feeling because ive been through that. When my EP recommended for a PPI i was so shocked and burst in tears. But through her explanation, online research and of course reading the posts in this site, I could say i was relieved and even have the courage to go for it. Your feeling is just normal especially in our ages. But never think of it as a barrier to go on with life. For me, pacemaker = LIFE. We are lucky enough to have an extension of our lives. After we have fully recovered everything will be back to NORMAL. Hoping for your fast recovery and my prayers are with you.

Best regards from the Philippines,

Wingwang

Hi Helen,

by Meggsie - 2014-04-17 12:04:43


It must be hard at your age getting used to your new little friend. I am in my 50s and work in a primary school and I lead a very very active life. Surprisingly 3 weeks ago I was told I needed a pacemaker ASAP, so two weeks ago they implanted it. I still have to catch up with my specialist in 2 weeks, until then I think it is going to feel like I'm living on an another planet, as I don't know anyone else that has one. The kids at school think it is cool because I told them I am an iBot now. They thought this was very funny because the grade I am in all have iPads lol You have to have a sense of humour I think.
I have always been super fit and the most medication I have ever taken is Panadol. So although I am an oldie I still feel a bit strange, I suppose like anything new it is going to take a little while to get used to. I was thinking of painting a smiley face on it and calling my new little friend Lumpy. Haha :) take care Helen and I hope you have a long, active and happy life with your new little friend.
Meggsie

hey hun ur def not alone xx

by nellie - 2014-04-22 03:04:08

My story very similar to yours other than the car part bless you. I had a monitor implanted to catch my blackouts....it caught one where my heart stopped for 17 secs. Week later phonecall from hosp ur coming in for a pm next week. Im 25 yr old girl who loves to wear dresses and low cut tops. Now have a big scar but also am lucky enough to have a device thats undoubtedly prob saved my life? I too was on a ward surrrounded by 80 yr olds and even the nurses had to double check why I was in coz they cdnt believe my age lol. I still get pain and a shocking feeling in my chest as docs think its resting on a nerve but im hear and far healthier. ..no more blackouts. Some days I cant believe I have a piece of metal in my chest stopping my heart from stopping but what can we do lol? Stay strong sweet your not alone xxxx

:)

by ahuett23 - 2014-04-26 02:04:10

Anna again :)
It did feel weird the nurses of course saying wow you're so young which didnt help and being the youngest on the floor. The beginning is hard i did end up back in the hospital but.because of course we have a new toy lol we dont know what to expect and with all the follow ups but i am so happy except for feeling tired yesterday i have felt like an energizer bunny lol sometimes more energy than I know what to do with its been.exactly 2 weeks.yesterday and i feel amazing just give it some time hun. If you owould like message me we can exchange email addresses. Everything will be okay. Trust me we were all scared :)

hope this helps :) sounds similar to my story

by ahuett23 - 2014-04-26 02:04:16

Hey,
My name is anna im 23 I had a pacemaker implanted on april 11 2014 since i was 10 yrs old i have been passing out it was so frustrating because after all the appointments the doctors couldn't find anything wrong and or the tests they wanted to do they said I was to yoyng so after so long of hearing it was for attention i gave up trying. It was here and there and as the years went in say within the last 5 years its been more frequent and started what i considered seizures i would pass out and wake up still slightly shaking and the last year i have been hospitalized numerous times so many i dont even remember how mamy times they say they never found anything my hr of 40 give or take wasnt a concern to the cardiologist lol it got so bad though i could hardly even get out of bed i was always so tired no energy what so ever always felt like i was going to pass out even just standing in line the one time i couldn't even make it home so i had to call an ambulance took me to a different hospital i was told no ifs ands or buts i am admitted they gave me atropine to raise my hr which it worked for about 15 maybe 20 minutes n my hr went back down to 35 40 within 8 hours they said my heart paused for about 4 seconds I also had v tach still not exactly sure what that is and my hr dropped to 20 bpm while i was sleeping they also had a neurologist come in did an eeg and ruled out that it was my heart causing that :)

You know you're wired when...

You have a dymo-powered bike.

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