I just recieved my pacemaker, New to Pacemaker.com

I am 15 years old and i recieved my PM a month ago. I have NeuroCardiogenic Syncope that is aggravated by my very slow heart rate. I was passing out at least every other day and i was having "episodes" (lightheadedness enough that i had to lie down) at least once a day sometimes many times a day! This all started happening 5 months ago when i was in the shower and passed out cold. After many hospitals stays and day after day of passing out they finally put me on Florinef. But no matter how much they upped the dosage i just kept getting worse and worse and the episodes were happening more often and it was taking much longer for me to recover afterwards. I was at Children's Mercy Hospital in Kansas City, Missouri until my two cardiologists began arguing on what step they should proceed with. So after long debating we decided to go to Mid-America Cardiology (Kansas University Hospital) where we saw Dr. Rhea Pimentel. She was very eager to get a solution and within a couple months we were putting a pacemaker in. It has been about 5 weeks since then and i havent passed out or had an episode since! MY LIFE IS FINALLY GETTING BACK TO NORMAL!!!!!!!! As a sophomore in highschool this was a very embarrassing thing to pass out in the middle of the hallway but my school handled it great and i have never felt better!! I am wondering if anyone else is about my age or if anyone needs some support i am always here!!! I love that there is a site like this and i wish i would have known about it when i had my surgery!!! But please dont be afraid to talk to me i am very happy and i cant believe i am actually getting to play basketball and do everything i ever wanted to do!

6 Comments

welcome

by Tracey_E - 2009-11-10 06:11:31

We have a number of teens here, they're in and out so I hope they'll say hi. Welcome to pacemaker club! A pm isn't an ending, it's a new beginning and I love that you're feeling good and already learned this. Enjoy those sports!

Thanks for commenting!

by JordanS. - 2009-11-10 08:11:44

Tracey thank you!! I appreciate you dropping by!

Ela-girl it sounds like you found the right doctor. I think that our problem can be helped or "fixed" if we can find the right doctor who is willing to try! It is hard to believe you had to go through this for so long before they finally did something! That is unbelieveable how they sometimes wont even want to try a pacemaker. They think it will ruin your lives but as we know it before the pacemaker our lives are ruined anyways! I am glad you have relief now and hopefully our pacemakers will continue to be blessings in disguise!

Keep in Touch,
Jordan

Hey kelley

by JordanS. - 2009-11-10 11:11:22

they new mainly what the cause was but my pacemaker is a brand new kind that not many people have (i am the 43 in Kansas city) so they were 1st very worried about putting a pacemaker in a 15 year old if i could possibly grow out of it...but by my family's history it wasnt likely because my dad, grandpa, uncle all have it! They were also worried kinda like you said...they didnt know whether my heart rate was bringing my blood pressure down or if my blood pressure was causing a drop in my heart rate. But i was willing to take the chance (a 50, 50% chance) and we have proved with the pacemaker it is my heartrate that brings down my blood pressure causing me to passout!

Jordan S.

Yeah!

by ela-girl - 2009-11-10 12:11:52

Hi, Jordan S!

I'm so glad to hear that you are feeling better since having your pm implanted. I, too, suffer from neurocardiogenic syncope and severe bradycardia. I'm 32 and have had my pm for 3 years now. I have been great ever since my pm and no blackouts since. It is so nice to have a life again! I was a teacher, so I understand the embarrassment of blacking out at school. In fact, I had my pm implanted via emergency surgery after blacking out and "dying" at school. I suffered with NCS for over 5 years before I moved states and got a great EP who saved my life. You're going to do great! Especially now that you are getting ready to drive!

It's late here, and I just checked the site before heading to bed. I saw your post and had to welcome a fellow NCS-er. :D Please feel free to message me any time. This site is wonderful and there are people your age here, too. I just wanted to let you know that I know exactly where you are coming from.

Happy pacing!
ela-girl

sick sinus sydrome

by kellbell - 2009-11-10 12:11:57

I have a pacemaker for sick sinus syndrome which like you is a very slow heartbeat. Ive had it 7 years now and have had no problems. Fortunately ive never passed out but i have had irregular heart beats but it rarely happens. Im 20 now and i live in ireland. it is shocking to hear you went for 5 months without it and you were passing out, but maybe they just werent sure of the exact cause. anyway send me a comment id love to talk more about it
kelley
(kellbell)

Hi Jordan

by kellbell - 2009-11-11 11:11:30

My pacemaker was fitted because they damaged my natural pacemaker when they were closing my holes, i had open heart surgery. I was terrified at the start because I had never even heard of a pacemaker and never knew i might need one. It was only when they were operating they found a fourth hole near it and if they were to close it they would most likely damage it, but they didnt want to leave me with a hole either. So now i have one. mines a 10 year one. Whats yours?

kelley

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