Concerned

To admin,
I am a tad bit concerned about one of the pacer person [username removed by admin]. NO OFFENSE OR ANYTHING. I am 14 iIve had 8 surgeries not only do 2 pacers but lead replacements to (due to the fact that kids grow, therfore, their leads cannot work properly). Now [username removed by admin] has said she has gone through 1 surgery. And has had a pacer since she was less than 24hrs. old, the math is adding up to me. I am not the only kid concerned or thing she is a tad bi weird, some of the other kids also feel the math doesnt add up. Others have also had up to 8 and at least 3. Just a little concerned.
Concerned pacer kids/teens

18 Comments

concerned

by pat - 2007-12-20 08:12:03

marisab,

i am an older woman and have just had my pm for about 4 months or so. so i really don't know much about younger people getting pm's. but for some reason i felt that i needed to make a comment or two on your post. but one thing i do know is that no 2 people are alike ( thank goodness lol) and no two cases are the same. what might be right for you and others, might not be right for all. i have read some of your previous posts and was quite impressed with your knowledge and your goodness. so one thing please, try not to be to judgmental of others. maybe this is the case with this other person and maybe not. but it is not for us to judge.

pleases keep up being the kind upbeat person that you are.

pat

sorry

by marisab - 2007-12-20 09:12:28

I'm sorry Pat, i'm not angry with you. It's just, I keep thinking what cary_58 is saying benifit of doubt, bt somtimes its ok. I'm an open and honest person so I will say if I feel uncomftorable, and tend to apologize later, even if I feel i am right. I just dont comprehend somethings about the whole situation. But I am sorry to all I offend, but I dont like this situation, especially when I'm not the only one whose talked to her before I noted that and noted the same thing.
Marisa
P. S I wonder if Santa knows not to bring us batteries for X-Mas. Merry Christmas Everyone!

Reply

by marisab - 2007-12-20 09:12:34

Not trying to say that I should be able to judge people (because well who am I to put someone down). Its just the fact is, I know from my cardiologists and past experience, yes batterys lasting to dose differ. But leads, you do grow a couple feet from being a baby to a teen. Therefore, your wire is stretched further (this is why adults dont go through as many surgeries as kids because they dont "out grow" their leads). If your lead isn't working than how is your pacer going to work? No I am not usually judgemental, but if she were not to be the age she says she is, or not even have a pacer, wouldn't you like to know, this site has really helped me and I love helping others on it. They're are weird things and people who do weird things in life, I dont judge them unless I feel like they are lying to me. You are very much right, no two people are like not even twins, but so far, I no of no kids, other than her, that claim to have been throuh 1 surgery. Its physically impossible! Maybe she has been through more than that. I just dont know. And what are people afraid of most in life? THE UNKNOWN! So I am sorry I am uncomftorable with this but some things dont add up. (And even with my C in Geometry I can add properly)! I'm sorry if you feel like I'm attacking you or her or both, but I am not very judgemental, but when I do mention things based on logic, I am usually right. And dont u think its judgemental to call me judgemnetal because I know more about being a kid with a pacer then you do and know when things dont add up. Not trying to seem like a smart butt. Just stating logical facts.
Sorry if I offended you.
Marisa

Admin's reply

by admin - 2007-12-20 09:12:39

Marisa,

I have been very impressed with your knowledge and willingness to help others on the site. You're an inspiration!

I wanted to let you know that I deleted the username to which you refer in your message. This is to avoid any upset feelings.

I had my first pacemaker implanted at the age of nine in 1978. My first device lasted 13 years before being replaced. My first lead (attached to the outside of my heart) lasted 22 years. An extra long lead was implanted to account for growth. So it is possble that others young members do not need alot of surgeries.

Happy holidays,

Blake

thank you smitty

by pat - 2007-12-20 10:12:30

smitty,

it seems like you always have a way of saying the right thing at the right time. thank you again. i did not mean to sound critical or judgmental, but as you said we have no proof of the situation of what is right or wrong. i would just hate for someone to get their feelings hurt and not come back to this site for that reason. this site has truly been a blessing to me. it has given me more information than any of my drs have and the people here are amazing.

thanks again

pat

Concerned

by SMITTY - 2007-12-20 10:12:49

HI Marisa,

Don’t be concerned. If ???? has not been completely truthful – AND I HAVE NO REASON TO DOUBT ONE WORD SHE HAS POSTED – that is her business. Also if she or anyone is just having fun at what they think is our expense, so be it. I’ve seen this happen in the past and after a short time it ceases to be fun and they disappear.

As for the leads not being able to keep up with ????? growth, haven’t you heard of the lead made of a coiled wire? Those can stretch, just like a screen door spring, right along with the growth of a young person.

Also, just recently I read an article about infants that have open heart surgery and a pacemaker implanted, the PM is placed inside the chest cavity next to the heart. Now I have no idea how much a heart increases in size as we grow, but I can see that placement as letting leads be used that can compensate for heart growth for some amount of time. Also, I went back and reread ????’s messages and she mentions only having a PM replaced. So far as I know, she may have gotten new leads at that time.

You are young, and have a pacemaker which we hope will serve your needs for many years. Being an old white headed geezer, I’ll try to get away just this once with given you some advice which is to never doubt what anyone says about their pacemaker. As someone above this said, we are all different and I can testify that the results from our pacemakers can also be very different. So different that many of us have had our doctors tell us a problem we are complaining about cannot be caused by our pacemaker, when it was really a case of that doctor not knowing sheep dip from wild honey about our problem.

Finally, I’ll leave you with these words from the Bible:

Matthew 7:1-5 Do not judge lest you be judged.

Smitty

PS: That bit about leads being made of a coiled wire so that they can stretch to compensate for growth in young people that was just my imagination running wild and I apologize. Ain’t no such thing that I know of.

yes

by jessie - 2007-12-21 01:12:30

i need to say that if anyone and i am saying if anyone heavy emphasis on the if used this sight and didn't qualify to be here and will fully went out of their way to upset people well this is just plain nasty.so i have said my opinion and not to upset anyone but we know that there are a lot of sick people in the world we live in to-day. it would be just plain nasty jessie

Carma...

by dward - 2007-12-21 05:12:52

The older I get, the more I get to see how "Carma" really works.
Carma, God, Buhda, Ying-Yang, The "Force" (what ever you want to call it) it works.

What goes around - comes around... period.

If you REALLY look around and think about it... it's soooo true!!

My point-
We really don't need to worry or get caught up in what others do, say, how they act, etc.

Concerned?!?!?

by uvagershwin - 2007-12-24 10:12:19

Ok, I think I know who you are talking about and to clear things up, she DOES have a coiled wire, she had not only 1 surgery but 4, and her PM used to be in her leg. When she was old enough, they moved it to her abdomen. When she was 8 they moved it to her chest. Also, it is just plain nasty to post rude and dissbeliving comments on a support site. To all the people who think marisab is right, I hope you read this because you have no right to go around trashing people like that. Her feelings were very upset. She wants to let you all know that if you don't stop, she will leave this sight. I hope you all are happy. This was the only club where she could fit in and you ruined it for her.

Concerned?!

by clichtenberg - 2007-12-26 11:12:24

I'm sorry, I rarely post here. And I don't read the posts here very often, because I'm a mom of a child with a pacemaker. I love this board though, and I am very glad that it is here. But, I wanted to comment on the pp post.

I don't want to make previous poster mad, but your friend she had it in her leg first? Really? A newborn baby? My son got his pacemaker at 10wks old. He is now almost 16 months old. And if all pacemakers are the same size, I don't think it would fit in his upper thigh, even now. Pacemakers are huge, when you look at them compared to a baby. From what I know, currently they place pacemakers in the abdomen, usually in a pocket of (fat) skin above the stomach. My sons EP said that his leads would need to be changed when he is about 3-4 years old.

I would like to say, that of course I could be totally wrong about what I've said. Also, I think when you write something, people don't always take it they way that you ment for them to take it. You know?

Ok, those were my two cents (I hope I didn't offend anyone). I just couldn't read without commenting on this one!

Concerned

by slarnerd - 2007-12-27 02:12:16

While I agree that it may not be appropriate to post the username of the person, I don't think this dialogue is inappropriate. I have noticed several instances of mentally unwell people ingratiating themselves to members here, only to attack them verbally or behave bizarrely later. I hope the user in question will chime in here. A lot of questions have clearly been raised that s/he could answer and explain - helping to educate us all - or clarify for us. I also think that if someone is committing a fraud here, they should be pointed out -- why should we waste our emotional capital and share private information with someone odd enough to pretend to be afflicted?!

I, too, am a mother of a child with a pacemaker. He is 17 months old and was fitted with a abdominal pacemaker when he was 40 hours old and only 4 lbs. I have done an exhaustive amount of research on pacemakers, leads, allowance for growth, battery life, etc. My son's leads were coiled as much as possible and though his ventrical lead has some remaining slack, the atrial lead has already kinked and fractured from growth. This is fairly common and CT surgeons only leave a limited amount of slack because of potential for tangling. There is absolutely no way that enough slack could be left on a lead to last from infancy to adolescence. Growth allowance from say age 7 to 18 could be left ... but the growth from infancy to age 5 is SO dramatic. It is also true that a battery can last for many many years, especially if someone is not totally dependant on it. However, I am pretty sure (though could be wrong) that infants are not given pacers in the immediate neonatal period unless they really need them - in a case of complete heart block AND a very low heart rate (usually under 50). In that case, they would be at least 80% dependant and the battery life would expire in 3-5 years under normal circumstances. I have never ever heard of a pacemaker implanted in the leg - not for adults, children, or babies. A google search also yielded nothing. I assume the user who has come to the defensive is mistaken about that detail. Because that is just silly. ONE EP in he Chicago area does implant transvenous, shoulder pacers in babies - but they have to be pretty good sized (not less than 34 hours) and I do not think he has been doing this for long enough for a teen to have had this done.

So I agree, it doesn't seem to stack up. However, maybe these are methods and/or practices done somewhere not part of medical literature??? I hope this user will respond ... I am very curious about this.

Sterling

Concerned...doubt it.

by uvagershwin - 2007-12-27 03:12:15

Ok, I will not deny it any longer. I KNOW I am the person marisab is talking about. I got my PM when I was 15 hours old from congenital heart block. Don't think it "adds up"? Well, one of admin's posts tells about a baby in Mumbia(I don't know where that is either) who got his PM at 15 hours. I was born and got a PM at UVa Medical center, where I too want to work as a pediatric cardiologist. Sterling, it is slander and blackmail to call someone mentally unwell... I didn't think that people on this site could be so rude. If you think I am rude, it is not nearly as bad as you people. How bad can your life be that you have to dissbelive someone else's case simply because you don't have all the facts? I hope you are happy with yourselves.

Sorry

by pacemakerkid - 2007-12-27 07:12:08

Uvagershwin, we did not mean to offend you at all I am very sorry that it hurt your feelings . I have had my pacer since I was big enough(I was a preemie)to have one I do see your side and marisab's side. So leaving this site is up to you but trust me you'll never find a better pacer club.
From,
Pacemakerkid

Be reasonable ...

by slarnerd - 2007-12-29 12:12:29

I never said that you were mentally unwell (even assuming you are in fact the person that Marisa spoke of). I said that I have seen many instances of people who are mentally unwell coming to this site and pretending to be someone that they are not. I don't know why but their behavior was totally bizarre. So, because you had not responded and we had no idea who you might be, it was safe to guess that you MIGHT also be one of those persons.

I don't doubt that you have a pacemaker or that you got it at 15 hours of age. I don't think anyone ever doubted that. I am sorry that you clearly totally misunderstood my post.

The things that I find curious are ...
1. Having had a pacemaker in your leg
2. Not needing to have the leads replaced yet
3. Not needing a new battery yet

If these do apply to you, I wish you would tell us more about them. Perhaps we could learn more from your individual experience. I am thinking, however, that these do not apply to you and perhaps you never said that they did ... and in that case, I owe you an apology.

I hope that if someone was making you uncomfortable here, you would also feel supported enough to raise it.

Sterling

Questions to be cleared up...

by uvagershwin - 2007-12-31 06:12:52

1: I had it in my leg because I was so small that that was (I guess) where it was easier to put it.
2: The leads are "coiled" so that they can extend as I grow. I know this because I asked my mom and I've seen the x-rays.
3: I have gotten at least 2 and probably more battery replacements. I remember being 4 and 8 when this happened and the next one will probably take place when I am around 16.
I also have congenital heart block.

Sorry

by slarnerd - 2008-01-01 02:01:29

I do owe you an apology and I am really sorry that I jumped on this bandwagon. You are obviously NOT one of those looney people that come here for some sick pleasure. But I also understand why people were confused by your experiences - I think your explanation of your circumstances was not complete, probably due to your young age. Here is my educated guess --

1. Your "leg" pacemaker was probably an external, temporary pacer. Most doctors (and especially 10+ years ago) will not attempt a pacer operation on a baby under a certain size. For this reason, many newborn babies that need pacing are hospitalized with an temp pacemaker until they grow big and strong enough for an implant. Maybe they strap it to a baby's leg? Or maybe they run the lead through the groin? I don't know. This is the only explanation I can think of - but of course, there could be another. Maybe your parents know.
2. If your permanent pacer wasn't implanted until you were bigger, that explains why it might have been coiled enough to get you to age 4 when they probably replaced the leads AND the battery.
3. Two battery replacements at ages 4 and 8, with a subsequent replacement at age 16 seems completely normal ... as does moving the generator to your chest at age 8 (though some docs wait longer).

There really are a wide variety of circumstances regarding pacemaker implantation, battery life, check ups, etc. However, there are a limited number of pacemaker generator types, battery & lead circumstances, implantation locations, timing issues, causes, etc for people born with the specific diagnosis of congenital complete heart block, without any structural heart defect or other problem. While doctors do vary widely in when they think the implant is needed, how low of a heart rate is too low, what concerns them, etc - the other circumstances are very universal.

I hope that also makes sense to others here. I hope that you will feel welcomed and supported here Sydney and again, I apologize -- though I am still intolerant of other people who really are faking a pacemaker here! :)

Happy New Year!

Sterling

SO SORRY

by marisab - 2008-01-01 08:01:48

WOW, I've been gone off the site for awhile cause I was on vacation, and I have never felt so sorry. Sorry uva. Thats all I can say. Because sorry is sometimes the only thing you can say. I'm sorry, but (you probably dont want to hear this but I'll say it anyways), a lot of people have hurt me before and its just been hard for me to trust people after a while. I mean I'll never forget the time I talked to a stranger when I was alone at bus stop last year...actually never mind, I just am not to quick to trust strangers anymore. So I am sorry. And your right, I had no right to say what I said. So like I said sorry. But if you lived in my life and have gone through everything I've gone through, well you wouldn't trust people when things dont add up to you. So I guess no apology can take back what I said. Yes what goes around comes around (aka guilt!). So yet agin sorry.

Totally forgive

by uvagershwin - 2008-01-03 09:01:51

That is OK. I totally understand and thanks for apologizing. I wish I hadn't said what I said either on my posts. You didn't know, and I was being soooo mean. I guess we are even now! :))))) Keeps going and going and going...

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