Pacemaker

So I'm 17 years old and you're probably thinking its a bit young for me to need support but I just need a friend to talk to. I was 7 months old when I first had my pacemaker fitted and I have had 3 operations and I am schedueled for another replacement next year. I lost my brother due to congenital heart block, which is what I also have. None of my family or friends have a pacemaker or know anyone with a pacemaker, and I always feel alone about it as if I'm different because there are a lot of activities that I have missed out on due to operations. I always feel guilty that my brother passed away and I lived because I have the same problem and I feel like its my fault, I just wish he was here so I could talk to someone because I sometimes cry and wonder how different my life is than other people. And why its so rare for me to get it so young.


6 Comments

it's not your fault

by cabbie - 2014-08-20 02:08:02

I just wanted to say nobody is too young to need support. We are all human with our share of troubles. I am sorry to hear about your brother but it's absolutely not your fault. Please stop punishing yourself about it. It's not good for your heart....

I know it's hard but try to stay positive. Your life is your life and you will only make yourself miserable comparing yourself to others. I don't know if you are a person of faith but prayer always helps me. I hope that as you get older you will make a few friends who can understand you and cheer you up.

welcome

by Tracey_E - 2014-08-20 02:08:56

So very glad you found us!!!! Your condition is rare but you are not at all alone. There are quite a few here with CCHB of all ages.

I'm old enough to be your mom (my daughters are 16 and 17) but I was born with heart block also and yes, it feels very lonely sometimes. I used to get so annoyed when I was told I couldn't do something and I never met anyone else with a heart like mine until I was 40, and that was through here.

I'll let you in on a secret. Once we get past the pediatric cardiologist? The rules change! The one I had growing up would have buried me in bubble wrap. My cardiologist for the last 20 years is young and active (well, I guess he's not so young anymore but he still thinks young) and he encourages me to do whatever I want. Some drs are more conservative than others, but if we have no other health problems and the pacer fixes our block, then we should have very few limitations. I got married, had kids, started a business. I hike or ski every vacation, love to kayak, do Crossfit every morning. No one looks at me and sees a heart patient. I don't talk about it a lot, mostly because I don't really think about it a lot, so my friends forget it's there. I know it might feel like it, but people probably don't see a heart patient when they look at you now. More likely, people see someone strong, a fighter.

Pleasepleaseplease do not feel guilty about your brother! Your feelings are perfectly normal but it's not at all rational to feel guilt. What could you have done differently? Nothing! Would it be better if your parents had lost both children? NO!!!! Sometimes a couple of visits to a counselor can help us put things in perspective.

You know that saying, whatever doesn't kill you, makes you stronger? It is TRUE. Really. We deal with things other kids and most younger adults don't even think about, which sucks, but it gives us a different outlook on life and I think it makes us grow up faster and be stronger. Something good can come from things that seem bad.

There is a facebook page called Young Pacemaker Patients that has quite a few active members your age. We have some here, too, but none are regular posters.

Hello Louiselily

by azviking - 2014-08-20 03:08:01

You have come to the right club.. You are among friends who are here to help one another.

Access this website every day and you will learn that we all lead normal lives. Grateful that the pacemaker - like all other organs - silently operates as it does day in and day out. Like eye glasses.

TraceyE and Cabbie have very good advice and the Young Pacemaker Facebook Page sounds like it could be helpful.

Please write to tell us how things are going. .

Many friends here 24/ 7

by Grateful Heart - 2014-08-20 06:08:35


You can see from the responses so far.

I'm very sorry about your brother, my condolences.

You must know deep in your heart, it was not your fault. You are here for a purpose...we all are. The purpose is not always clear.

Live your life to the best of your ability. Much joy and love awaits you.

Remember to laugh....that truly is the best medicine and find comfort in knowing that your brother, your Guardian Angel is looking out for you always.

Grateful Heart

Hello Louiselily

by Dazzler - 2014-08-21 04:08:50

As a person that had a PM young for Hear Block (5 years old) i can empathise with the way you feel as a lot of times growing up i felt i was on the outside looking in and thought i couldnt join in with my friends in certain sports or mucking about. I was lucky tho as my friends and family didnt molly coddle me, and told me i am no different and to stop being lazy and using my PM as an excuse, was the kick up the bum i needed and from there on i did everything my friends did, Football, Rugby, basketball etc. Did all the rough and tumble things too and never thought about my PM. As the guys said above its good to have someone to talk to as you will feel so much better.
Like you i never knew anyone with a pacemaker, when people that knew me found out they couldnt believe it as i didnt act like they expected someone that has one too, people have an idea of how us PM patients should be, but the reality is we are the same as them without one
I had my 3rd PM put in 31st July this year, the guy in the bed beside me had his 1st one put in, he was the first person i met with one in 30 years, I see your in the UK, I am in the Scottish highlands and not many PM patients around that i am aware of so it good to speak to someone else from the UK.

hi louiselily

by kamrymichele - 2014-09-03 12:09:43

I understand how you feel except I have 3rd degree heart block and got my first PM when I was 3months. And I am 19 now im always here di you need to talk too. I know how it is i also feel quite lonely cause I have no one to talk to that would truly understand what its like to have a pm im from texas feel free to message me anytime if you need to talk to someone

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I have had my pacer since 2005. At first it ruled my life. It took some time to calm down and make the mental adjustment. I had trouble sleeping and I worried a lot about pulling wires. Now I just live my life as I wish.