19 with a pacemaker

you need it! The earlier you will accept the better

by Zeb - 2018-09-24 20:05:45

When i joined this forum i came with the same feelings: i don't need it. I felt like my body that i have always taken care betrayed me. I did many sports and i was well trained and it was hard to accept because i have never had any black out just pauses during the night...the longest 8 sec. People in this forum told me that the earlier i will convince my self that i needed the better. And it was like that. 18 sec no heartbeat !! wow!! You have been lucky! Trust your doctor and consider that it is enough ONE pause too long to die!  Or a black out while driving.... 

FYI my PM is probably not working except in the night but after 5 months i don't feel so limited. I can do everything like i was doing earlier with a bit more of care to avoid hurting hard in the area where the pM is implanted.

19 yrs old must be harder than me to accept it however believe me it is much better to have a small limitation than stop living.... At the end this is the question: would you accept to risk you life or to accept with a small limitation. The answer is known. 

Your thoughts and doubts are all appropriated especially after 1,5 months after implant ....you need to give more time to you and to your PM to realize that sametime you don'teven feel to have it. I wish you all the best.

Zeb

hej

by Electric Elise - 2018-09-24 20:57:46

Tjena! Du är inte ensam and that’s where i’ll stop with the Swedish, as it’s nowhere near as good as your English.

Firstly, you’ve just been through a really tough time in your life, tougher probably than any of your friends or co-workers. And you’re 19. It’s way normal to go through the entire spectrum of emotions, from anger to sadness to doubt, you name it, you’ll probably have it all, kaktus i kubik. At one point, they won’t all be negative thoughts, but you just have to give it some time. 

More importantly.. that 3rd degree AV block? That’s proof you need your pacer, it’s as simple as that. That’s how i got mine nearly 3 months ago, by the way. Until i went into the block, not even the doctors were 100% sure i “reaaaally” needed a PM, even though there were a lot of other signs pointing in that direction. Not to mention the “oh but you’re still so young (35) for a pacemaker!” chat that i heard from a couple of docs! However, that 3rd degree block shut everyone up, convinced everyone that a PM was the way to go and the rest, as they say, was history. If ever they needed proof, the block was IT.

Oh, about your docs telling you it’s there “just in case” - that’s exactly what i was told after the implant (basically that they didn’t think it would be needed too often). So when i went for my 1 month check-up, i innocently asked the EP who was checking the device if “it had ever been used during that month”. He gave me this weird look and said “uhm.. yeah, almost 50% (!!!) of the time”. OK, i admit, it would have been nicer to hear it only kicked in once.. but at the same time, when i heard that i knew the right decision had been made.

I’m sure you’ll get to that stage of agreeing with the docs, but don’t worry if it doesn’t happen straight away. You’ll know more in time.

On a completely different note, i can’t believe i missed the hottest summer yet!! I lived in SE 2016 to 2017 and both summers had a maximum of what! 27? Bah! 

Do keep us posted on your progress. Always here if you need to just let it all out. 

adjusting

by Tracey_E - 2018-09-24 22:33:25

"how do they know it's not a one time thing?"  Because it has happened regularly your entire life. A monitor recorded your heart stopping. That's pretty darned clear.

I do not agree that stress caused it. An electrical short circuit in your heart caused it, that's your diagnosis. When healthy young people have problems, sometimes doctors say stupid things hypothesizing what it could be and giving the easy answer instead of digging deeper to find out what happened. Your heart stopped. Stress does not make your heart stop. It happened when you were a child, you were not stressed then, were you? 

It is hard to accept when our body lets us down! I was diagnosed with av block when I was 5, found out I'd need a pacemaker in my teens, got it when I was 27. I now have two kids your age so I've had a little more time to get used to the idea. You are not broken, stop letting thoughts like that poison your mind. Your heart has a short circuit, now it has a little computer to make sure it doesn't stop. Don't give it more power than that. 

If you broke your arm, you'd get plates/screws to fix it. If you were diabetic you'd take insulin. This isn't much different, but for some reason when it's the heart it's harder to accept. And that's ok. It's ok to be angry, to be confused, to feel sorry for yourself, to be in denial. Let your body heal and let your mind mourn. Then make a conscious choice to get on with your life. This will not keep you from doing anything you want to do. In fact, you can do things safely now. Like drive and walk down the stairs without fear of passing out. 

Here's the deal.... you might only need that pacemaker for a few seconds at a time, you might only need it a few times a year but in those few seconds YOU CAN DIE. Sorry to be blunt, but you were out for nearly 2 minutes. If you had a pacemaker, you wouldn't have passed out at all, or if you had it would have made sure your heart was beating again immediately.

Problems like this never ever go away on their own. They stay the same or they get worse.There are no medications to fix it, only a pacemaker will fix it. Also, odds are you were born this way. Being tired, stressed and drinking may make it worse but they do not cause it. Even if you never drank again, slept 8 hours a night and never got stressed again, your heart would still pause sometimes. 

I can promise you that you are at the worst time right now, it will only get better from here. As you heal and feel good again, we think about it less and less. I know this might sound crazy right now but I truly rarely give mine a thought. You will get there, too. Two things helped me adjust. One was learning as much as I could about what was wrong with my heart and how the pacemaker works. The other was being active again. The busier I was, the better I felt, the less I thought about it. 

As for living with a pacemaker, it truly will not keep you from doing anything you want to do. I got married and had two kids who are now about your age. I work out with weights every morning and am training for a half marathon with my oldest daughter. My youngest daughter loves the mountains and when I visit her in college we hike and ski. I go to amusement parks and ride roller coasters. Most people don't even know I have the pacer, they just see another busy mom. 

It will be ok. If you have questions or want to chat with someone who has been in your shoes, feel free to message me. 

Age doesn't matter

by Theknotguy - 2018-09-24 22:35:13

Most people need glasses.  We don't think a thing about it.  You're just one of the people who need a pacemaker.  

The problem with heart stoppage is they get worse and sometimes the heart doesn't start again.  I don't think you would like that.  You no longer will have to worry about passing out.  

We have people on the forum who lead very active and "normal" lives.  For a while we even had a person with a pacemaker who was doing sky diving.  I don't recommend it but she was happy about it.  I can do everything I did before I had the pacemaker and now, even more because I have a strong heartbeat.  

Hopefully TraceyE will chime in shortly.  She's on her 5th pacemaker, has had children, and leads a very athletic and active life.  So there are few limitations with having a pacemaker.  

If you really have a hard time accepting the pacemaker, I would suggest having a few conversations with a psychologist.  A psychologist can help you sort out your negative feelings about your unit.  

You have a lot of living to do.  Go out and enjoy your new life with the pacemaker.  

Recognize myself?

by AgentX86 - 2018-09-24 23:12:33

First of all, a third degree (also called "complete") heart (AV) block is the loss of all electrical signals between the upper and lower chamber of the heart, the "atria" and the "ventricles".  The ventricles are the main pump of the heart, so if this signal is cut off, the heart doesn't pump.  The brain isn't involved - the heart is autonomous from the brain (more or less).  So much for a little anatomy - it really will help you get on with your life if you understand why you are where you are and what your pacemaker is doing for you.

I also have a complete heart block but in my case it was intentional to treat something called "chronic atrial flutter".  I got to choose the heart block because, though you probably won't believe it but there are far worse problems to have. I also had several heart pauses caused by the heart's natural pacemaker going wonky. I don't need it anymore because I have the pacemaker.  ;-)

You're only nineteen and have a long life to look ahead to.  The pacemaker won't interfere with it at all.  The only thing that will stop you from doing what you want to do is you.  Sounds trite but it really is true.  Your pacemaker is a trivial bump in your road. 

I like my pacemaker.  It makes me feel a lot better than I did without it.  You will too.  Passing out isn't fun, particularly if you're doing something fun like walking down stairs or driving a car.

me too

by dwelch - 2018-09-28 02:26:01

Half my posts I comment on TraceyE.  learned more today than I have in years.  You have joined us in special section of the pacemakerclub.  The best thing of all is that heart block is super easy for pacers.  It is as if they were invented just for us.  A dual chamber (or three chamber/biventrical) pacer is the perfect solution for complete (level 3) heart block.

I didnt know her (TraceyE) issues were found so young.  Mine were found pre-teen and my first pacer when in when I was 19 years old.  Unlike TraceyE and me, you sound like you didnt have some/many years of time to settle in on this idea.   

My first pacemaker predates the world wide web.  I had nobody to talk to or ask questions other than my doc once a year.  I really didnt have many concerns.  I could tell the device was working immediately after.  I am on my fifth device now a biventrical, you can talk to us about that in about 20 to 30 years, nothing to worry about now (nor then).  You will always be the youngest patient in the waiting room and possibly the youngest patient in that practice.  I know from experience that that can be a good thing esp that young. I know my first doc had a child my age and I cant help thinking there was some flavor of parental connection when treating me.

I didnt find this site all that long ago, have learned a bunch on my own having various doctors over time, but am still learning things from the accumulated weath of this site.  I hope google translate or other helps you out to fully appreciate what is here.  Ask the tech or doc for a copy of the printout of the interrogation, for your own education and if you have future questions that info helps us.

Basically you pushed your heart block to the breaking point, should have had the pacer sooner, before your near death experiences.  That would have been tough for me, why are we putting this in I have not had any problems, I was resistant, but a few factors changed that, the doc was getting concerned that it was time,  a 15 year old cousin had died a couple years before in an accident, saw what that did to that family/parents didnt want to do that to my parents.  I was going to college and into the next phase of my life, had no idea how insurance worked, had no job, no way of paying for this thing, so put even those things together and I figured I wont be able to get one for many years after college and have a job and enough money, and would I live that long.  So i trusted the grown ups and went with it.  

I believe that I would have had events like yours and eventually would not have made throug one.  The statistics for children with heart block were pretty bad.  Now its no big deal put a pacer in, fixed, done. 

No matter what you do with sleep and partying and eating and exercising, your heart would have caught up with you.  Heart block is easy to fix with a pacemaker.  A pacemaker is easy to live with.  In 30 years YOU will be the TraceyE that carries so many people through this transition, comfort and education, at this site or one in your native language.  I have the same number of pacers and years as she does, but not the verbal skills.  I also was able to live long enough to get married and raise a child. She started college a few weeks ago and is a year younger than you.  Thank you medtronic, st jude, guidant and boston scientific.  I have a little bit of most of the brands in me.

Not so many folks here can do this, but I did some rough math at one point and figured out roughly the day where I had had a pacer half my life.  I took the day off of work and reflected on that.  That was years ago and I have had a pacer most of my life now and always will.  And even at 50 years old Im still the youngest patient.  Its the only doctors office I go to now where they comment on that, oh he's so young he can get his shirt off by himself, he can climb up on the bed.  Wow thats all the meds you take!  I like that one the best...

The devices are so much smaller now than when I started, they do so much more, I was on a holter off and on that first year trying to get i tuned, they dont need to do that anymore.  I had no resources other than the doctor for information, no internet (correction no world wide web), pacers were only just becoming common.  Even the EKG and echo machines are so much better now.  If they say you have heart block you probably do and you definitely need a pacer and you wont regret it.  You will have a lot of pacers over time, you will wear out leads over time.  You will retire doctors over time and have to get new ones.  Even at 50 years old and having five pacers (one at a time) and four leads on the same side (three being used one broken) we mostly talked about preservation of the other side with the fifth one.  What do you want to do if we cant get that fourt lead in there do you want us to move to the other side or tunnel or what, it was my decision for some reason.  But do the math maybe I live another 30 years (will see if I dont work on my diet and exercise) with devices, either they will remove the stuff thats on the left and put in new stuff or abandon it and move to the other side.  That would be a cool xray to have 7 leads at one time even if they remove the first four my understanding is they will do that after.

Welcome to the club!  Hope to see you here for decades to come...There are more of us at this site and in the world, so long one of us is still around we will be 30 years ahead of you letting you know what to expect.  I think we both have biventrical pacers now.  My first four were dual chamber and that will serve you for a couple-three decades, we can talk then.

Curious?  Do you feel different?  With me my heart had grown so big dealing with the problem that I could feel every beat, not taking my pulse I always felt it it was just a part of life.  But after the pacer, that was gone, an empty feeling inside because it was working so smoothly?  Are you feeling something similar? 

BTW assuming you are dialed in and the pacer and leads are working you can put in those long hours and not worry about your heart giving out, you could still pass out from exhaustion but not from heart block.  And wont die the next time it happens at least not from heart block.

Sorry that I ramble on, re-reading your question.  If this were a one time thing, although heart block is easy to see on an EKG AFAIK, each checkup they turn the device off basically to look for your natural pace if there, that portion of the test, that strip of EKG will tell the doc what they need to know.  Unlike a lot of folks here, you may be pased 100% of the time, I think my last two reports were something like 98% but basically 100% (on the ventrical side), thats just heart block, the pacer is replacing that electrical connection to synchronize the upper and lower chambers.  This doesnt mean dependence and 100% paced is not bad and doesnt mean your battery is going to drain soon, we get bigger batteries than some other folks to aim for that 10 year give or take goal per device. But if you are not paced 100% of the time or zero percent then ask about it, shouldnt my lower chamber be paced more (need to get that printout with this info on it, it is YOUR data, YOUR body, YOUR insurance that paid for the device) with heart block?   

No matter what you read here, ask your doc all the same questions.

Reaching out as a fellow teen

by Buzbuz9 - 2018-10-08 05:23:18

Everyone else here has already said pretty much everything there is to say, and they all make some amazing points. I just wanted to reach out because we're the same age, and I've personally never met anyone my age with a pacemaker before. I turn 19 at the end of this month, but I have had my pacemaker for the majority of my life. I just wanted to let you know that your emotions aren't out of the ordinary in anyway, I still struggle with feeling broken on a fairly regular basis. And coming to term with the scares takes a while.

I wish you the best and I'm here if you ever want to talk.