New to the club!

Hey everyone! My name is Mattie and i am 20 years old. Yes, pretty young to have a pacemaker. I get reminded daily! But after lots of research im learning that its much more common than i thought! 

LONG LONG story short, i have passed out several several times throughout my life starting at age 7. After seeing dozens of doctors and dozens of normal tests they just kept reffering me to psychologist and upping my Anxiety medicine. This past year things have gotten much worse for me. I moved to college and eventually had to move home due to my severe symptoms. I was constatly tired, couldnt breathe, passed out everytime i was active, depressed, severe anxiety, stomach issues, headache, numb feet and hands, and the list goes on and on. I was even in a heart monitor for a month and EVERYTHING came back normal. Eventually i began to believe i was making it all up in my head and i was crazy. My family doctor was the only one that believed me. She would not let me give up on testing because she truly believed there was something wrong with me. She came to the conclusion that i had a disease called POTS. So she sent me to a new cardiologist and he ordered a Tilt Table Tist. Which i thought would come back normal just like everything else. 

8 minutes into the test, within a second i went from completely normal (vitals and symptoms) to flatlined. My heart rate went from 80 to 0 in two seconds and i was flatlined for 30 seconds. Which apparently is an extremely long time. And thatll get you a pace maker real quick!! They figured out that i have a disease called Bezold Jarish Reflex. 

I am now 7 days post implantation and i already am noticing a difference in the way i feel and my energy levels! I am having Sharp pains in my incision area several times a day. Anyone else have that problem? Im assuming its just the healing process. There is also a tightness feeling too in my chest. Maybe pulling is a better way to describe it. I am a female so im wondering if its my breast pulling my incision or muscles. 

 

Sorry for the long story! I look forward to reading everyone elses stories and having people to talk to! 

3 Comments

Hey

by Buzbuz9 - 2019-01-30 01:47:06

Hey Mattie,

Welcome to the club! I'm Abi and I'm 19. I've had a pacemaker since I was 7 months old( I had many holes in my heart and when they went to repair them they completely destroyed my AV node), so I can testify that you will definitely be told how young you are to have a pacemaker on a regular basis. Nice to hear from someone else close to my age on this page. Having that many fainting attacks sounds terrifying. Being bedridden and week sucks. 2 years ago one of my wires had apparently broken and I had started feeling really weak, quite frequently, I was missing school and was getting really bad dizzy and fainting spells to. all the regular doctors I went to said it was all in my head but when I finally went to my cardiologist they confirmed that I had broken a wire that I wasn't crazy. Just goes to show that you know your body better than anybody else does.

The sharp incision pains are pretty normal I had them frequently while my scars were healing. And as far as the tightness goes I'm sure it is just your muscles trying to get used to the new foreign object in your body. Once your body gets used to it I'm sure it will go away, but if it's gets too bad definitely talk to a doctor. 

The one tip I really wish I/my parents had when I was young was to start your scar treatment early. as soon as you get the okay to wear lotion and things again I would recommend getting a scar cream to help your scars heal better and so that they won't be so pronounced. 

Feel free to ask me anything, and good luck :)

welcome

by Tracey_E - 2019-01-30 09:38:30

Glad you found us, and most of all, glad you have a doctor who kept pushing for an answer! 

All sorts of weird pains are normal as things heal. Sometimes it'll be sharp like a knife, sometimes zingy or like ants crawling, somtimes it's an ache. Nerves are knitting back together and scar tissue is building around the device. Tightness is a combination of all that plus not moving as much and most likely sleeping in weird positions. Gentle stretches and getting back to normal should help. Resist the urge to not use the left arm. Don't lift anything heavy or raise it overhead just yet, but other than that try to use it normally. It'll help with the stiffness and also prevent the shoulder from freezing. 

And YES 30 seconds is a long time!!! 6 seconds will get you a pacemaker. 

welcome

by dwelch - 2019-02-12 05:13:33

I am 51 got my first pacer at 19, am on number five.  Welcome to the club.

Even at 51 Im the young guy in the office waiting room.  At this age which to you is really really old, but to me isnt so much, its the only doctors office I get the "well you're so young that ....".  Other doctors offices I am at the "just get used to it" age.

Anyway, glad they found it glad a pacer can make life better for you.  You will be an old pro like Tracey E and myself and many others, but you likely will not see others your age in that doctors office.  While it is not uncommon our docs often dont have too many of us.  But thats fine.

Listen to what Tracey E says, just throwing that out there.

The fun ones are when I open my mouth too wide with my head turned the right way shortly after a new pacer has been put in, I get one of those zingers.  She pretty much covered it there are various types of pain during recovery which can go from days to weeks.  Some of them go away after hours or days the others can linger on like trying to sleep on the pacer side.  I can usually drive to work after a couple-three days, but cant sleep on that side for at least a week or two, wash hair one handed for a while, try to do the lean the head thing, but then you get the zinger type pain.  If it didnt hurt it would be kinda funny if you think about it...

You and buzbuz are my daughters age she just started college, so while she doenst have heart issues your story touched a little close to home as a parent.  Am so glad that you two are here there are some others your age that are or were about to get their devices. And there are parents of children that could maybe talk to your folks on how to cope, how to decide if the doc is doing the right thing or not, etc.  Certainly Mattie you earned your instant pacer the hard way. 

I am not glad that you have issues that warrant pacers, that is not what I am glad about I am glad that since you do have pacers you have found this site and can find folks (of any age) that have shared experiences.  When i was your age and on pacer number one there wasnt a world wide web, there were no forums like this, it was basically your whole age later that I first found this site and was able to actually communicate with other pacer patients.  My folks had nobody but my doc to talk to about this stuff.  thats why I am happy that you have someone to share with and maybe your folks have a resource as well, I know you are adults but it wears on your parents too...

Buzbuz9 has had as many devices as I have in a fraction of the time, Id listen there as well.

Happy that they found your problem and hopefully they will take you off the meds for the conditions you didnt end up having.  There are some other teens here not just old people.  We still have experiences we can help you with of course.

 

 

 

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