not wanting pacemaker / anxiety?

sorry if i'm not posting his in the right forum, but i'm just feeling so lost and trapped, and i don't know who or where to look for answers. i don't technically have a pacemaker yet, but i'm getting one implanted inevitably.

 

i'm fifteen and i was diagnosed with third degree av block (complete heart block) within the last year. i'm asymptomatic to a certain extent, but have a low enough rate (39 resting) that my dx told me that it's basically impossible for me to not have a pacemaker by the time i'm eighteen. 

 

i feel really stupid for saying this, but i'm really afraid of getting a pacemaker implanted. the idea of just having some device inside me for the rest of my life just gets under my skin, literally, and i'm so scared about all of the possible complications and side effects. i'm really active and i'm afraid that getting this will totally decimate my fitness. i don't want to be dependent on a smart device for the rest of my life, especially because i'm on the younger side of people who get pms implanted. also like hacking? i've been researching it this past day and the idea of having a cloud-connected device inside of my at all times is kind of petrifying. 

at first i was totally fine with the idea of getting paced, but now after more research, it seems to carry so many other side effects and complications within life that i just don't know what to do, and i don't want to have to deal with those complications for the rest of my life.

i have to wait for the day my heart is weak enough to get a pacemaker, and i'm just so scared . does anyone have any advice on getting overt this? sorry if it sounds like i'm being overdramatic, this is all just so foreign to me.


9 Comments

Overwhelmed

by Chopper - 2022-08-11 07:48:30

I'm not sure if I'm the right person to talk about your situation, I'm 76 and like you was told that I needed a PM not to long ago, July 12th to be specific. Quite a shock since I was looking for just a change to my meds. Once I had a chance to just absorb the news I began with reading posts in this forum to get a sense of things, my daughter did some digging to get a different perspective.

To be honest I was more concerned as to what my life would be like with a PM than the surgery itself. I guess the silliest thing I dwelled on was having a small box sticking out of my chest, so far I just see a slight bump, mostly surgery swelling that should shrink in time. My surgery was outpatient, in the front door at 5:30am out the front door at 9am. I spent more time in recovery messing with the nurses than in surgery. 

 I'm now in day 15 of recovery and I hardly notice it and don't think about what's it's doing to help me get to a place of just getting on with my life.

Bottom line is to take your time and let your support team help sort out all of the questions.

Chopper

Anxiety

by Good Dog - 2022-08-11 08:31:05

I am so glad that you posted here, because it is really important to discuss and talk about your feelings. The first thing I would tell you is that what you are feeling is absolutely 100% normal! There would be something wrong if you weren't feeling this way! So I first want to tell you a little about my experience: I was not quite as young as you when I received my pacemaker over 35 years ago, but I was young by anyone's standards. I suddenly went into 3rd degree block and had a pulse rate of about 30 to 35 bpm. It went lower while I was in the hospital. They did not give me a choice and implanted the PM the next day. When I came out, I became extremely depressed thinking that my life had changed for the worst and would never be the same again. It was winter-time and I thought I probably could never shovel our driveway again. I was so wrong, but that is how much I knew at the time. After getting the PM the doctor released me and went on vacation. He told me nothing about what to expect. After a couple weeks of extreme depression I called the hospital and told them I needed to speak with someone to find-out what I could do and what I could not do. This was before the internet, so I was unable to find info quickly. They transferred me to a really nice cardiac nurse that listened to my concerns. So the nurse tried to explain that the PM would not change or alter my lifestyle to any significant degree and asked if it would be O.K. to have other PM patients around my age call me. I told her yes, of course. So I suddenly started getting calls from young guys that were by profession; roofers to accountants. One guy told me that he works on hot roofs and carries around those heavy (70 lb) bundles of shingles all day. Another told be when he goes to the beach he throws a towel over his shoulder to hide the small scar from the PM. My point is; when I found-out that these guys lived regular-normal lives, my depression began to lift. Today I realize that nurse was a real saint. I don't know her name, but I will never forget what she did for me. So after a couple of months, I decided that I would test the limits of the PM and start exercising more and playing competitive basketball. That is when I began to realize that I could do anything that anyone else can do. I played both competitive basketball and baseball and If I told no one that I had a PM, there is no way they would have known. So 35 years later I can tell you honestly that my PM did not change my live whatsoever in any negative way. Not even a little bit. So except for getting battery changes every 8-9 years, which are a piece-of-cake (in and out the same day), I have zero regrets. On the contrary; the PM allowed me to feel great and gives me the assurance I don't have to worry about feeling bad or having any heart problems again. The other thing that I would tell you is that in recent years the technology has advanced so much that the size of the PM is really small compared to when I first received mine, and the functionality is greatly improved. The implant surgery is very safe and recovery is quick and easy. They can even hide it under a muscle so that nobody knows it is there. Don't be fooled by the posts you read here, because probably about 98%-99% of PM patients have zero reason to come to this site and/or post anything. What you see here is from a very, very small percentage of folks that have complications. So rest assured that you have really little to worry about. As-a-matter-of-fact, you should be looking forward to feeling better with a rock solid minimum pulse of at least 50 to 70, depending upon where they set the minimum. You'll never have to worry about it going lower again!

So even though you have little to worry about, we would like you to come back and post again after you get your PM. We always enjoy hearing back from new PM patients and the good news that follows. I promise we won't say; "I told you so".

BTW: Your PM does not have to be connected to anything. Mine is not. I control when and how it communicates to the hospital. I have a Medtronic PM. You can tell the doc what your concerns are and tell them what you want. However, rest assured that these things are bullet-proof today.

Wishing you nothing but the best!

Sincerely,

Dave

Amazing how similar

by FG - 2022-08-11 09:26:41

Amazing how this anxiety is the same from young to old. It must be identical. I am 67 and with asymptomatic  3rd degree heart block junctional rhythm absolutely regular at 44 but they won't let me get neck surgery without a pacemaker. By the grace of God the neck pain is diminishing and that is now second in importance to the pacemaker issue. But I have exactly the same feelings as both of you. I keep wondering what are we treating? I have no symptoms except for when you feel my pulse or when you take an EKG. I guess I always thought of myself as so healthy, I was a high school 3 yr letterman in swimming, I jog and do anything I want, and when I went to be cleared for surgery because of my age 67, they said oh you have a slow heart rate and need a pacemaker. No surgery until pacemaker. Then they walked out of the room with no further ado. So I'm feeling alone and looking around scrambling for information. As far as information goes there are several highly experienced and knowledgeable people here who also are in touch with the feelings and emotional aspects. They will I'm sure soon leave comments. In today's day and age we don't always get to see each other in person or even hear each other's voice anymore and I suppose like the gain in technology that allows for modern pacemakers we now have these type of websites that allow us from around the world to communicate. I suppose my rational side keeps telling me I have nothing to worry about, but my emotional side isn't quiet yet. So let's all keep in touch.

hugs

by Lavender - 2022-08-11 17:37:08

I am sorry you are having to deal with this. At 15, it must sound like a sentence of something awful to have lingering over you. But can I change your perspective a bit?

You had a sneaky dangerous situation living inside that was miraculously discovered. You now have the reassurance that this can be fixed at the right time. You found this site and you are getting mentally ready for the day when you get your lifesaving device. 

To address your concerns:

You are not lost-you are found to have a problem that is fixable

You are not trapped-you are set free of this problem ruining your life

There is a solution at hand and there are people who know how to fix your body.

You will live to be an old person like me. I hope your kids don't give you premature white hair.

You will have fun, exercise til you are tired, run, play, achieve great things and you will not be held back by a faulty AV node. There is technology to work around that! So there, you AV node!!TAKE THAT!!

No one will hack your device but the people who are supposed to check it and adjust it. I know I thought mine would be like my bluetooth, but it doesn't play music or let me text or email. 

My pacemaker is hidden with only a thin white line of about an inch and half. I have to point it out if anyone wants to see it because they have to put on their reading glasses it is so small. My guy still thinks I am sexy. Lots of famous people have them! My friends all want to know all about my new $58,000 computer inside me. (that was the cost of the device alone)

You are on your way through the journey of acceptance. YOU ARE NORMAL!  Everyone goes through this path, some faster than others. The stops on the journey are something like this:

1. Normal-you are going along your normal path and all is the normal you know.

2. Bad news-something happens that totally rocks your world, whether it be illness, a death, your love breaks up with you, some tragedy occurs

3. Denial-NAH this can't be happening to me, I am too young, I thought everything was ok, I did not do anything to cause this, they must be wrong, after all things were fine just a minute before I found this out. 

4.Anger/Aggression- ok now I am PISSED OFF!! who are they to say I need this? Why is this happening? What did I do to deserve this? I AM NOT GOING TO TAKE THIS! I do not want to hear about it, and I am going to argue til my face turns blue that I am not going through this @#$%!!!

5.Depression-aw gee, it must be true, I am so unhappy, I am going to die, my life as I know it is over, I might as well curl up in bed and pull the covers over.. I AM DOOMED  ;-(

6. Bargaining-ok so I am lying here in bed, and getting a bit bored of it, my mind is thinking how I can get out of this. I know...I will try and eat better, walk more, get healthy without going through this crap and I promise to be good. Yeah, that's the ticket-I am going to see if there is any way around this 

7.Acceptance....Hey! I AM going to live, lots of folks have gone through this. Geez even babies get them, This is so cool that I have a way to keep me alive even though my heart faded out on me. Thank God! What a miracle. I better get going because I have so much to do! I gotta get my driver's license, decide what I am going to be when I get out of high school, ask that cute person out, take hikes, camp, there is a whole world out there waiting for me! AND I AM ONLY 15!!!

Listen, you do what you gotta do. You are not alone. You matter. We are here, your super secret team behind the scenes from all over the world. We have trod the path before you. You are not the first! We will be here awaiting news of your life. Look at those steps outlined above, and see where you are on your journey. I guarantee you will reach step 7!

...Written by a gal whose AV node and Left bundle branch both blocked on me! I still fast danced at my class reunion last year!

 

 

You are not alone!

by Alexa Hesseldenz - 2022-08-11 19:31:01

Hi! My name is Alexa and I also have a 3rd degree AV block and a resting heartrate of about 17BPM. I got my pacemaker in when I was 18 (I am now 24) and had ALL of these same feelings. I am here to assure you IT WILL BE OKAY!

I still get anxious on occasion when I think about having a medical problem that will be part of me for the rest of my life but whenener I start to spiral that way I think about how cool it is. Science and technology is changing ang growing so fast I predict in the next decade the intrusiveness of these devices will be so minimal.

I also feel so much better (literally can do everything I did post pacemaker besides metal detectors) health wise, life before the pacemaker and feeling faint/lathargic/weak was so much harder.

 

All in all, it is absolutely normal to feel overwhelmed and anxious before a pacemaker surgery, it is scary to be young and have to depend on a device to keep your heart going so give yourself grace! BUT just know life on the other side is not so bad (:

Get it and wear it with pride

by DutchyDawg - 2022-08-11 22:55:53

I can only imagine how you feel.  When I was 15 the last thing I wanted to think about was getting a pacemaker.  However, my advice to you is to get it now on your terms rather than wait and wake up in the hospital with one that was implanted to save your life.  It's very likely that things won't get better on their own unfortunately.  But you should also be comforted in the fact that technology has really advanced and a pacemaker even comes in the form of a pill shaped device if you only need pacing in one chamber.  By the time you are my age of 55 they will probably have something completely different.  After a month or so of recovery you wil be running around and doing the things you want to and will likely forget you even have the darn thing.

I have my pacemaker for bradycardia as my heart rate was dropping into the 30's as well.  I was so lightheaded and the brain fog was horrible.  My hands and feet were like ice cubes and hurt too.  And the fatigue was miserable as well. With a low heart rate, your blood is not getting to all of your extremities and you learn really quick about the body parts that suffer. And it only gets worse as time goes on.   I am now paced around 76%.  Mostly when sleeping and sitting.  When I am active I am fine.

Stay strong, and come visit this site.  There is so much great advice and it is amazing the support you can get from this group of wonderful people.  

You are who pacemakers were developed for

by Gotrhythm - 2022-08-16 15:46:52

While it is true that most pacemakers these days go to the senior set, helping old people is not what spurred the early research. Pacemakers were originally developed for people just like you, young, healthy people whose heart's electrical system has a glitch---people who, with a pacemaker, can expect to live long, active, fulfilling, productive lives.

The fact that you feel anxiety is normal. It's a natural response to a situation we have no experience with and that our gut tells us could be dangerous. I'm glad some members your age have answered your post. Learning about others who have had the problems we face, went through them, and lived to tell the tale can go a long way to quieting anxiety. 

The pacemaker will not "totally decimate your fitness." Get that fear out of your mind right now. We have members who are athletic at all levels of fitness. Many who compete. Their pacemakers do not hold them back. They enable them to participate far more than they would without the pacemaker.

I felt the same as you about the thought of putting an electronic device inside my body. It creeped me out.Yes totally. But I got over it. Message me privately if you want to know how, but the important thing right now is that you understand that that feeling is not an insurmountable obstacle.It's just something your mind is doing and you can change your mind.

I'm a little concerned about the "all side effects and complications" you have read about--especially if you read about them here. Remember what I said about other people who had the same problems? Before trying to decide if you would have the same complications first check the poster's age and diagnosis in their biography. My guess is 99.9% don't apply to your situation. They don't have your diagnosis and they are both older and sicker that you are.

People who are doing great aren't going to take the time to write everyday about how great they feel, so if you judge the number of problems by the posts, you will get a very skewed impression of how prevalent problems with pacemakers are. In fact "complications and side effects" are rare.

If you have some specific worries about complications or side effects please ask about them, so you can get some real data on how likely or unlikely they are to happen to you.

Best of luck to you.

 

You will be fine!

by Advaita - 2022-09-02 00:27:34

I'm 69 and just got my pacemaker 3 weeks ago. I was riding my bike and passed out twice in the same week. The second incident sent me to the ER and after lots of tests, I emerged from the hospital 10 days later with a pacemaker. There was no pain during surgery whatsoever. I was of course nervous and that's totally natural. There is some residual soreness and aching but everone tells me that will go away in a few more weeks. I believe this is saving my life and I was lucky I didn't die. The overwhelming feedback from PM users is that they lead normal lives and are not hindered in any way. My father had a heart attack at age 64 and had a PM for 22 years until he died. He lived a normal life throughout. It's good you are expressing your emotions but those will pass. If the medical advice is to get a PM I would encourage you to accept it and go ahead and get one. Please come back in 6 months and let us know how you are doing. :)

welcome to the club

by dwelch - 2022-09-03 20:41:19

There was another above, but I am perhaps one of the few here in your situation.

I was younger than you when they discovered CCHB.  The doc monitored and waited though.  Now that a public internet exists and a website like this exists, and being older, etc.   Had the doc known what activities I was doing, he would not have waited.

Now in the 1990s pacers were not new, they were just starting to be somewhat common and not these literally hockey puck sized things (we have a user that started in the 1970s I think, with the massive ones).  The doc was a one man show, he wired up the pacer, ran the box, had this primitive ekg thing, and seemed in my case to mostly be concerned with heart size and wall thinkness.  And that seemed to be driving implant as well as probably I was still growing as are you.

I was very active, I had to quit soccer, which was a passion for me at the time.  And I was a bit pissed at the doc and my parents.   But I got into other things, and pre-pacemker I was into bmx/freestyle and vert ramp skating which were big things back then.  And they should have killed me. It is unbelieable that I surivived those handful of years.   I worked at a bicycle shop (got cheap/free parts, basically worked for free, parts and pizza), and there was a road bike century race.   So I borrowed a road bike from the shop and did a half century, no training, just did it.  Told the doc, he was very pissed off "people in your condition have died from stunts like that".   So I didnt tell him again what other things I was doing,  I was a teen... 

At that time they did not know what caused CCHB.   

I am going to be very blunt, CCHB kids did not tend live into adulthood before pacemakers.

Complete heart block is the most trivial thing to detect, only a few seconds on an ekg and they can see it.   It is the best heart condition you can have IMO if you have a heart contition, it is trivial to fix with a pacemaker.

I was diagnosed before your age. My first device was at 19 years old.  I am on my fifth device.  I have an original lead in use, 34 years with pacers, one lead is that old.

There is nothing to it, you literally forget you have the thing, it is literally like a belly button or middle toe.  unless you bump it you forget you have it.  It is just a body part.   Every 10 years give or take you get a new one.   It is no big deal the first one it is a new experience, you dont know what to expect,  but you are young and will breeze right through it, aint no thing.  Each one after that is no big deal.  I was driving like 2 or 3 days after my last one.  

Just like anything else on the internet, or even this site.  Folks that are happy with things that work right, do not post comments, dont make videos on youtube, post on social media about how, it is still working perfectly today, after 30 years.   Its all the bad news, the tiny percentage of folks that have issues.   

You are fortunate to have this site, it was literally decades from my first pacer to finding this site.  

We are unicorns on this site, we are not alone one of the heavy posters here also has CCHB and was a bit of an emergency in her 20s, there is at least one other I can think of but may be more.   And myself, and I check in randomly as you can see from when you posted to when I commented.   I might be an extra special unicorn becaause of the age of one of my leads.   

Anyway, you will be the youngest patient in your cardiologists office. 

You will have a lot of devices. 

If you choose you will be one of the old timers at this site.  You will have more devices and years than others.

The restrictions are minimal at best.

Life with a pacer is trivial.

Heart block is completely fixed with a pacer, you will be NORMAL, and can do normal things.  I continued to skate and bmx and do all kinds of activities. 

You MUST get a device if you have CCHB, it is not a maybe it is a device or death choice.  The longer you wait the higher the risk is the risk is not after the device the risk is right now, before the device.   

Your risk is right now, not after the device.

Folks live with wearing glasses or taking meds all of their life.   The pacer is neatly tucked inside, takes almost zero maintenance, plug it in turn it on, let it run for 10 years or so.  With the tech today they may be able to give you one that last well over 10 years.

I am going to keep saying this, in my case I should not have survived.   The doc waited, as I was going into college he said your life stye is going to change your heart is bigger, etc, it is time.  I trusted my parents who trusted the doc.  In my case we had lost a teenager in the family to a car accident (my cousin) and I saw how devistating that was and didnt want to do that to my parents.  The other thing was I had no clue how insurance and stuff worked and figured I better get one now while my parents are paying for it and not any later as I might have to pay for it.  As a teen those were my thoughts, dont die as a teen and I dont know how to pay for this. as we as I trust the adults which is rare for a teen, but I did.

There have been some teens on this site in the past, again you/we are rare.  Maybe you can find and reach out to them.

Every life change has anxiety and that is very normal from something like this to, leaving home to go to college or get a job and apartment, or whatever.   From one job to the next.  Living with someone, breaking up and not living with someone.  These all have anxiety, and doubt.  In this case you MUST get a device if this is the condition you have, not a choice.  You can, to some extent, determine when.  But the longer you wait the higher the risk.

It is sad that media and movies and such make it seem like pacemakers make the patient some weak, fragile thing.  That is not true, certainly not true for heart block.  For heart block they make you a normal person with a normally working heart.  You are in fact much less fragile and much stronger and healtier as a result.  You are normal.  And have all the same normal risks in life.   I wish the movies/etc would stop with this false stereotype and get educated.  A pacer is a bigger deal than glasses, but someone with pretty bad vision does not become more fragile once they get glasses, they are much less likely to walk in front of a car or off a cliff than before.   Same here.

If you dont like the doc for some reason, go to another, you WILL have more than one doc in your life, even if you stay in the same town with the same doc, that doc will retire at some point and you will have to get a new one.  But more likely as you live your life and move places or due to insurance or whatever, you will change docs.   If you do not like the doc or trust them, get another, seriously.   They work for you , you do not work for them.  Find a doc you trust, trust the doc you find.   If that doc says its happening next week, you say okay where and what time. You do have one job and that is, doc I like to run I am in this sport or that, or I desire to be in this sport or that so do we choose a different device.  The doc choose the device for you, brand and all.  The major brands are all good, no one is better than the other.  I have medtronic and guidant and some other brand leads. I have had medtronic, saint jude and boston sci pacers.  Its all good.

Please stay in touch, there are a ton of folks with the generic pacer experience and there are a percentage of us that are CCHB folks.   Everything you are thinking is perfectly normal, your conerns are normal, but you have to decide when to do this, not if but when.   Ask as many questions as you need.  Have your parents join the site and ask questions if that helps.   Whatever you need, we are here.

 

 

 

You know you're wired when...

Your kids call you Cyborg.

Member Quotes

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.