Any teenagers out there with PM

Hi I posted a message a little while ago as felt very alone with my baby who had a pacemaker fitted when she was 5 days old as she was diagnosed with complete heart block while I was pregnant. I got a wonderful response which made me feel a lot more postitive and not so alone anymore. I was just wondering if there was any children/teenagers with a PM who could share thier personal views and comments about living with a pacemaker it would be great to hear from you. I am hoping as my little girl gets older she can use this site for info and support which I'm sure will help her just as much as it has me. She is now six months and loved every minute of her first christmas.

8 Comments

Welcome!

by slarnerd - 2008-12-27 10:12:11

Hi! My son is almost 2 1/2 and also got his pacer early (almost 2 days old) and his 2nd (replacement) this past June. He also has complete congenital heart block due to my antibodies. I know exactly how you feel. My older child (age 4) also has second degree block, but no symptoms and no pacer.

My son's scar (even having surgery again 6 months ago) is barely visable - even at the pool people don't notice it right away. He has no limitations at all at this age (plays soccer, does Little Gym, swimming classes, goes in bounce houses, plays with most magnet toys, you name it). He wrestles with his big sister and friends, jumps on the trampoline, and much more. All cleared by his wonderful EP. I know of teens with pacemakers who take precautions and ride roller coasters, play baseball & basketball, play goalie in hockey, cheerlead, and much more. I felt just like you when my son was 6 months old - but every day now, I see the many many things that he will be able to do. The things he cannot do seem small and almost insignificant.

I also wanted to invite you join a large online group of moms of paced kids and kids with heart block - we'd love to have you and you can "talk" more to moms who really understand what you are feeling and can answer almost any relevant question. It will also be a good resource for your daughter to find paced friends as she gets older - there are several babies and toddlers.
http://health.groups.yahoo.com/group/heartblockkids/

I am so glad you had a great first Christmas with your little miracle! Feel free to message me if I can answer any questions for you. :)

Sterling





Just To Let You Know

by jrf329 - 2008-12-28 05:12:33

Hi, I just wanted to let you know I am a 17 year old with a pacemaker and my life is normal except no metal detectors or MRI's. I was born with tetraology fallot and a VSD and was also missing the third chamber of my heart. I had a great team of doctors and it was repaired. I two months or so back on October 8, 2008 received news that my heart was stopping of 10 sec at a time in my sleep and needed a pacemaker. and i am doing a lot better, so i just want you to know that your child should be able to live a pretty normal life. I wish you good luck


--
Josh

Lovely to hear from you

by OLIVIAROSE46 - 2008-12-28 06:12:53

Thank you so much for your response, your little boy sounds like he's into everything which is great to hear, your situation sounds almost identical to mine as I too have the antibodies that caused the CHB, I can't find out that much about that side here in England as its so rare, they just tested me for lupus as they are associated with it and I haven't got that, but always wonder how you get them in the first place and how something that does me no harm as I'm not an ill person at all but they can then do so much damage to an unborn child. I have such mixed feelings with it all as majority of times feel positive mainly because Olivia is such a happy baby who you would never know had any problems, but then sometimes I read other peoples stories and think have we got all this to come and am I just being naive with it all, its a worry everyday that our bubble is going to burst. I'm sure you feel the same, and you sound very knowledgeable with it all which I'm a firm believer that knowledge is power. Thank you again for your reply the worst thing with this is feeling alone and the more I'm on this site the more I do feel positive. I must just say my huisband has just said, there will be no doubt your British with a title like that!! Lovely!

12 year old son

by rkuba - 2008-12-29 07:12:10

Hi,
I just signed on. I was a little nervous about signing up for this support group. Never done anything like this but saw the notice about 10 year old girl and had to sign up. I have a twelve you old boy and it was also a world wind. He went to the hospital for what they thought was an asthma attack. I was then told his EKG looked like that of an 80 year old man. Anyway. He had a pacemaker put in October 30. He seems to be adjusting well.

Lovely!

by slarnerd - 2008-12-29 08:12:27

LOL about your husband saying you were showing you were british with your message title! On my mother's side, I am 5th generation american and we still hold on to a few britishisms - like "rubbish."

Anyway, we do have at least one other british family in the yahoo support group and several others from S. Africa, Australia, Spain, Ukraine, and more ... so I hope you will join.

I tested positive for the antibodies but I do not have lupus or sjogrens syndrome symptoms. Like you, I am a very healthy person. It really does not make sense. It is very rare and not well understood. I do realize now that I am developing some sjogrens symptoms but not enough to be medicated. I hope you stay well and that your daughter continues to thrive!

Sterling

Thanks Josh

by OLIVIAROSE46 - 2008-12-29 11:12:24

Hi Josh Thanks for your comments, you sound like you have had a lot going on in you life so am pleased to hear the pacemaker has helped you and that you feel your life is normal, that is my wish for her to live as normal life as possible so was great to hear that. All the best to you too.

Launa & Olivia

12 year old son

by OLIVIAROSE46 - 2008-12-30 11:12:48

Hi There
I too was nervous to sign up but was so pleased I did as I could finally speak to people in the same situation as me and not have to hear just what the doctors say. I'm not sure who has the 10 year old girl but they may respond soon as my little girl is 6 months and had her pacemaker fitted at 5 days so its all we have known since she was born. It is all very daunting and happens so quickly but I just remind myself that we are lucky it was spotted and treated with a pm as so many have said that once you get the pacemaker you can live a normal life, which is hopefully in time how your boy will be. I would go by how he feels and you say he is doing well, but any worries go back to your doctors but hopefully they are monitoring and will do whats best for him. Time is a great healer and enables you to catch up on everything thats happended and get your head arpund it all. If someonme had said my little girl would be like she is now at 6 months which is a happy healthy baby i wouldn't of beleived them, but she is and I take each day as it comes.
I wish you all the best, let me know how he gets on
Launa

sorry little late

by third1 - 2009-01-21 02:01:38

Hey i just wanted to say im 22 now and have had a pm since i was 6. and man i had a ball while i was growing up, i have a number of friends who have various heart problems some requiring a pm and some not. but what i have realized and im trying to get out there to most parents let kids be kids. meaning let them go out there and play basketball or baseball, or bike ride. start early cause that way they learn there limits, and also its good when u go to the doc they can say how they really feel under certain things and that's great for when there older. I know a number of people who were "held back" meaning there activity was closely watched when they were kids and now as adults they are not the same, they don't know live when people arnt watching them 24/7 sorry to say. I for one and a proud supporter of scouting and i believe that boy and girl scouts is a good way to teach them how to do activity's and be safe at the same time. Me myself went back packing for a few days and came back and my doc was like did u do this i said yes he said ok. and most docs i know encourage activity i know there have to be limits and that's why i say start young so that way your daughter will learn them at the same time you do. so my big advice beyond all this blable is not to hold them back let them be a kid at 5, 7, 10, 15 even 22. cause that's the only way there gonna know how to deal with there problem

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Member Quotes

A properly implanted and adjusted pacemaker will not even be noticeable after you get over the surgery.