My story

Hey, my name is Jacob Johnson. I have known that I have a heart condition since I was 11 years old. I am 15 now. Last year at school I was running warm up laps around our track and had sudden cardiac arrest and collapsed. I had to be airlifted to the hospital and then I was kept on ice for 12 hours. I then got a pace maker/ defibulator put in. I stayed in the hospital for a week and now I'm back home. This year, after school started back I began passing out due to stress. I also was having irregular heartbeats. This made me feel terrible. There is not a night I don't cry a little over the day at school that I had sudden cardiac arrest. I had a girlfriend that was heartbroken. All of my friends were sad. I was just wondering if anyone else has been through stuff like this before? Thanks

9 Comments

Thanks

by popjake01 - 2013-04-04 01:04:46

Thanks everybody!

Caring Grandmother

by Unexpected Changes - 2013-04-04 06:04:57

Hi Jacob, I am at the opposite end of the scale to you. I am nearly 70 and just got my first pacemaker. So far all is going well. I am so sorry that your life has been turned upside down with your cardiac arrest. I truly hope that things improve for you. From what I read sometimes different things have to be tried before a solution is found to give us good health. Take care and try and cheer up.

Hello

by Moner - 2013-04-04 09:04:47

Hi Jacob,

I'm sorry you're crying at night, I can't imagine how scared that day was for you.

I'm glad you found this club, there are quite a few members here that are around your age, I hope they will join in.

Like Unexpected Changes mentioned, sometimes different things have to be tried before a solution if found. Please hang in there, and bless you for writing today.

Moner
>^..^<

Hi Jacob...

by gpiero - 2013-04-04 12:04:18

My name's Gianpiero and I've always known about my heart problem - it's really quite rare and has never been operated on.

When I was 14 (I'm 40 now) my doctor told me that they could try and operate but there would be a 50-50 chance of it working - I said, "Great, 50% better and 50% the same, let's do it!", he replied, "No, 50% better and 50% not here anymore..." which kind of put a damper on things.

I can't tell you the number of nights I felt like you feel when I was your age - but it did teach me one thing, make the most of every moment and don't be afraid to do anything.

Believe it or not, you're one of the lucky ones - you're a survivor - you should be so proud of yourself for getting through it and that's how others see it too.

Talk to people about how you're feeling, there's no better cure for anything. Don't bottle things up just let it out.

If your pacemaker is making you feel rough get it checked and see if the docs can change the settings so it's better for you.

Four years ago I had a pacemaker fitted and decided to have an epicardial one (leads on the outside of the heart) rather than an endocardial one (leads on the inside of the heart) to save me from having to use Warfarin.

I've felt so well these last few years I couldn't tell you. But, it seems, something's not quite right and I now have to be fitted with a endocardial one anyway.

Life's not always easy, unfortunately it's harder on some than it is on others, but as I said, you're a survivor and a fighter, don't stress (easier said than done, I know) and talk, talk, talk... you'll be surprised how many people will listen.


Take care.

GP

Jacob

by Grateful Heart - 2013-04-05 06:04:04

I am so sorry for all you have been through. You have such a bright future ahead of you! Everyone here has great advice for you.

Another suggestion, talk to your Doctor about going to Cardiac Rehab. It will help you gain confidence and start to get back to your normal life. It is scary in the beginning, we do not know how much to move or exercise hearts. The Nurses will let you know your target heart rate for exercising at this point.

In Cardiac Rehab, you exercise starting out slowly while Nurses monitor you. It is very comforting knowing they are there. You will meet other people with similar conditions as yours too. It truly helps to relieve some of the stress and fears while trusting and strengthening your heart again.

I wish you all the best, let us know how you progress. Ask any questions or concerns you may have, this is a very caring group with wonderful, experienced fellow pacers.

Grateful Heart

kids

by Tracey_E - 2013-04-05 09:04:32

There are not a lot of kids here, you've probably picked up on that! I, too, was in your shoes at one time, but now I'm a mom with kids your age.

A counselor might be a good idea, even a visit or two can help put things in perspective. You are too young to be sad all the time! You've had to deal with so much more than other kids your age, things it's hard for an adult to handle. Don't be hard on yourself for having trouble accepting and moving on with a smile. Sometimes we need to ask for help.

There is a group on facebook called Young Pacemaker Patients. They have at least a few kids your age.

See if your hospital has a group called Little Mended Hearts. There will be other kids there who have been through similar.

And ask your parents to see about finding you a counselor to talk to. Even if you go once or twice, they can help you feel better. Ok, putting on my mom hat for just a second, do your parents realize how bad it is?? I know my kids (15 & 16) don't tell me everything, it's a normal part of being a teenager. Don't hide something like this from your parents. They can help.

Jacob, I'm glad you found us. Lots of us have dealt with heart issues for years and have come out of it ok, even healthy and happy. I'm 46 and can keep up with my teenage kids just fine. People don't look at me and see a heart condition, they just see ME because I choose to not let my heart problems define me. It took me a while to learn that, I definitely was more likely to cry myself to sleep than laugh about it when I was 15 but I want you to know that it does get better.

It gets better

by DCPacer - 2013-04-05 12:04:19

Hi!
I am 40 years old and have had my pacemaker since 2005 after my doctor accidentally burned my AV node and put me into complete heart block during a routine ablation surgery for SVT. That first year, I had lots of sadness and fear and one very bad panic attack where I thought I was having a heart attack. I was not one of those people who dusted themselves off immediately and ran marathons. I saw limits and felt doomed. I'm writing now to let you know that for me, life has gotten a lot better. So much better that I really don't think about my pacemaker at all anymore... I have only started going back to this site because I am having a battery change soon. Otherwise, after the first year, I was able to fill my life with relationships and activities and interests that crowded out the bad memories and the fears. You endured so much trauma, no wonder it is difficult to cope. What I tell my children is that my life expectancy is the same as anyone else, that I have a chronic serious condition that is managed, and that in all other ways (than cardiac!!!) I am the healthiest mom out there. So try to remember all the things you are and are interested in... that you are more than that experience. I hope that helps.

Each day is another

by familyliving - 2013-04-05 12:04:56

Hey Jake,

My name is Trevor. I am currently 27 years old, but was 16 when I found I had a heart condition. At 17 I had an ablation and a defibrillator put in. In my situation, I didn't have any symptoms at school, so I was able to keep the fact that anything was wrong hidden for a good period of time. However, when I started not showing up to school at random(I didn't feel like leaving the house), people started asking what was up. I can't say I know exactly how you feel, but I do understand your feelings. I have to tell you from experience not to let your troubles with your heart get into your head too much. There is nothing that any amount of thinking or emotion can do to correct a small glitch. Listen to the dr, follow his advice, and do what you can to stay healthy. At the same time, don't forget to still be young and have fun. Go hang out with friends and your girlfriend. They obviously support you and you have to let them! Also, ask your dr if there is someone else in your area who is or has gone through close to the same thing as you. Just knowing you can call someone who understands what you are feeling can make the entire day go much better. If you need something, just jump back on here. I've found there are plenty of people here willing to listen and give you advice based on their experiences!

sad

by owls__ - 2013-04-13 11:04:52

Hey! I've just turned 16 now and had my ICD when I was 15. Your experience was probably a little tougher than mine as you've gone through having a cardiac arrest (I just got mine for fainting once and a few other risk factors for sudden cardiac death), however the procedure and aftermath is pretty much the same for a lot of people and I experienced the same emotions as you did... I don't know why but I just got these random episodes where I suddenly felt really depressed and the smallest things would get me really angry (I punched a wall so hard the other week that I broke part of my hand and I'm one of those girly teenage girls haha) I also got these panic attacks and cried about every day..

I felt upset for no reason most of the time but I knee it was caused by the surgery... After a few months the feelings slowly began to go away, maybe you are also experiencing other stresses that are contributing to your sadness because I know I was. I was also feeling tired a lot of the time so I went to my gp and I had low iron.. I also told her about how I was feeling and she said she would refer me to a psychologist if I didn't improve but I did :))

Blah blah I could go.on for ages about my experience (I already have) but what I suggest is that you definitely have to let your feelings out and talk to someone about it, I know its easier said than done but it might make you sort your stresses and issues out. Just be thankful for everything (:

Feel free to message me anytime :D happy to chat x

You know you're wired when...

Your heart beats like a teenager in love.

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I'm 44, active and have had my device for two years. I love it as I can run again and enjoy working out without feeling like I'm an old man.