Anyone out there like me ?

Just wondering if anyone out there is a young person with complete heart block ? I am paced 100 percent of the time my heart rate without the pacemaker is below 30 bpm .. My doctor told me he could not bring my pacer below that. It scares me to be paced so much so young ( I am 30 yrs old) . I exercise everyday , LOVE the gym but always have the fear of breaking a lead since I depend on my PM to live ! I do feel a million times better since I have had this wonderful invention implanted into me ... more energy, regular hear beat it is just wonderful ! Whenever I go to the Pacemaker clinic I am always surrounded by older people and have never bumped into a younger person like myself. Just wondering.

11 Comments

Remembering...

by LAB - 2012-09-14 01:09:24

I am not so young anymore, but was 13 years old when I had my first pacemaker put in for a complete heart block. I remember being the youngest in cardiac units at hospitals, the youngest in waiting rooms..etc. but that was 46 years ago! Yes, I have been 100 per cent dependent the entire time. I have been blessed all those years with great doctors, no recalls, no broken leads, and no medication. All I can say, is " Live each day to the fullest. Get the most from each hour, each day and each age of your life. Then you can look forward with confidence and back without regrets" (by S.H. Payer)
But most important, I am thankful to God every day.
Enjoy this second chance of life.
Leslie

Hi

by Gellia3 - 2012-09-14 07:09:43

I got my PM at age 26 for complete heart block back in 1975.
No one under the age of 80 had one back then! And, yes, I had alot of head shaking and "Oh, you POOR thing. You're so young!" (rolls eyes)

Well, I'm not so young anymore. I've had my PM for 37 years now and will soon be 64.

Didn't miss a thing in life and have and will continue to enjoy it to the fullest. I hope you will enjoy yours too.

Best to you,
Gellia

Amazing site !

by mantarle - 2012-09-14 08:09:38

Thank you so much for all your posts ! This is so encouraging to know that you can live a long normal life with a CHB. I am so happy I found this site! Nice to know that I am not alone and that alot of ppl live many years with this condition ! All of your posts are a great mental help for me ! Thank you all from the bottom of my heart !

welcome

by Tracey_E - 2012-09-14 09:09:51

Glad you found us! I also have CCHB, got my first pm at age 27 in 1993. After almost 20 years, I'm still the only person in the waiting room who's not retired! Everyone always assumes I brought a parent or something.

You aren't going to break a lead! They might go bad, but they don't suddenly break, it's a gradual thing. I had one go bad, but it kept working for more than 5 years after we first saw the problem in the interrogation reports. When I got my last battery change, they added a new lead, no big deal. Keep going to the gym, live life to the fullest and don't worry about it!

one more thing

by pani - 2012-09-14 10:09:46

dont think like this that you are just one person in the world who has PM in this age ,i just want to advise you ,i always was crying before to sleep for my lovely husband and i always blamed God and asked him why why ??!!!!because my husband was 18 years for first PM ,imagine ,even you cant find anyone here at 18 years and he said that he was biking 2 hours per day befor he got PM then all of his dream became................but i always want god to help us and you have to accept that is life ,im happy and i just have one concern for changing PM and lead and im sure that God and all of my friens here will help me.
I ALWAYS UNDERESTAND YOU ALL ,i konw it isnt commen but you will be fine just it takes time .

no worries

by pani - 2012-09-14 10:09:51

my husband is so young and at the beginning i always stopped him to do sports even walking beause i afraid but now i always take him out for walking and we go swiming everynight and recently we go to gym together just for biking ,dont worry you will be fine .

I GOT MY FIRST PACEMAKER AT ONE MONTH OLD!!

by Jennheart - 2012-09-14 12:09:00

Hello Mantarie,

I am a 24 year old female from New Jersey! I had complete surgical heart block as an infant at one month old due to fixing my VSD. I was also born with AORTIC STENOSIS. My heart rate was good when i was born but after VSD, my AV node was cut and my heart rate never came back to normal, as a baby it was doing 38bpm.

I just recently replaced my pacemaker on June 21st for the SIXTH time! I haven't had any problems with it.. THANK GOD!! lol I am constantly paced as well. Without the pacemaker, my heart now does 45 so its better, they said a person can live at 50 beats without it but i cant because when they turn down pacemaker i immediately feel horrible!!

Please message me! i would love to stay in touch!! i don't know anyone with a pacemaker, nor anyone that young with one! thanks to this site, i come across so many people =)

Theres nothing to be scared about

by ElectricFrank - 2012-09-14 12:09:56

While I'm 82 yrs I have the same condition as you. My HR was down to 26 the night before implant and I could still stand up. So it really isn't a matter of sudden death if you break a lead. the 100% dependent thing just means you are 100% dependent on the pacer to have a normal heart beat.

I know what you mean about the clinic full of old people. While I'm an "old people" I still am very active. One of my favorite activities is driving my Jeep around in the mountains and desert. A few years ago I went over a 13,000' mountain pass in Colorado.

The so called heart block which is really just a defective nerve bundle is totally fixed by having the pacer wire around the problem.

So make friends with your little device and have fun. I'd rather die while enjoying myself than to sit around protecting it and die miserable.

frank

hi

by mariamartinez - 2012-09-16 02:09:26

i was 12 when i got my pacemaker i'm 17 now and ive even gotten a replacement batterie already and i do everything normally i run up to 3 miles and play sports (not on school teams because i;'m not suppost to do contact sports )during PE and with friends . i do practically everything a normal 17 yr old does i go to the childrens hospital and im paced 100% of the time too i honestly didn't feel a difference with it or without it . i feel normal (u get use to it dont worry ) :D

Greetings!

by PMlifer - 2012-09-16 08:09:07

I am in a similar situation. I'm 31 and paced 100% in the atrium. I've had a pm since I was 2 and have not had any negative effects from the experience. I generally forget about the device until check up time or my kids push against it. They are durable little buggers so do what you are naturally inclined to do for excersise and enjoy the ride.

I'm glad you found this site. I know I took comfort at finding people who have had devices for several decades.
Hope all is well.

hi

by Jennheart - 2012-09-19 02:09:52

Maria Martinez I can't believe you're only 17 with a,pacemaker! I don't know anyone they young! I had mine since I was one month old & I'm 24 now and just received 6 sixth one

Pmlifter its so great to meet someone who got there's as a baby! You were 2 yrs old that'd the youngest I know lol I was one month !

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