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Cindy Bonasse
Posted on Friday, June 13, 2003 - 03:44 am:   

I was wondering if anyone has experienced there ICD firing while awake. Mine fired once while I was sleeping. It woke me right up and I thought my husband had kicked me in the back and it took a minute to figure out what had happened. I am just curious about when your awake how it is. I have experienced some panic attacks from worry when out alone in public that it may fire while I am alone. Can anyone help me out with this?
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Deryl Northcott
Posted on Monday, June 23, 2003 - 12:57 am:   

Dear Cindy
I have had my ICD for only 4 months. A couple of weeks ago it fired twice in one day, while I was awake. The first one was during a work meeting. My personal experience was that I felt dizzy (just long enough to say 'oh, I feel dizzy', then I felt as though I blacked out (people present said that they didn't notice this, it was so quick), then I 'came around' feeling as though someone had punched me in the chest. After a couple of seconds of thinking 'what on earth was that???!', I realised that my ICD had fired. There was no pain afterwards, I just felt a bit shaky and sweaty for a couple of minutes. The whole dizzy-faint-ICD fire sequence was over with in probably less than 3 seconds, so it's not too terrible. However, I can relate to your panic attacks. It's a bit scary to think that I got so little warning that anything was wrong. I definately wouldn't drive a car now, and like you I'm a bit anxious about being on my own. However, this is no doubt irrational, because I felt fine within minutes of my ICD firing and, although my work colleagues did call an ambulance, I don't really think I needed one and could easily have just laid down for a while then carried on.
I find that, because I'm now on 75mg of Atenolol beta-blockers per day, and I'm still adjusting to this dose, I feel dizzy and lightheaded quite a lot. This adds to my anxiety, because every sudden wave of diziness reminds me of the feeling just before my ICD fired, so I tend to get a bit panicy. I've found that controlled breathing exercises help a bit, but it still feels nice to have someone else around.
I do hope this is of some help to you, although I'm still pretty new to all of this myself, and not finding it entirely easy. Feel free to email me direct if you want to (grantderyl@hotmail.com). Just remember (as my doctors keep telling me), when it fires, it has worked and you're still here! Perhaps we're lucky to get a reminder now and then that we're alive! Take care, Deryl (38 yr old female in New Zealand)
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Tonicha Darby
Posted on Tuesday, June 24, 2003 - 11:10 pm:   

I have got 3yr old twins and last year my little girl had a seizure. It was sraight after she had thrown a tantram, I thought she was going to die it was that bad, i even had a asthma attack because of it. She was taken to the local AnE but they couldn't find a reason for what happened. She had a couple of more attacks(not as bad though) and still they could find no reason. She was sent for tests but nothing, then they told me they wanted to test her heart, well i was pretty sure that nothing was wrong so you can imagine how i felt when they told me she has Long Q T Syndrome. While we were all there they gave us an ECG each, this showed that her twin brother also has it and that their father was border line. The twins were put on Beta blockers straight away. Lia was sent to another Cardiologist and he said he wanted to fit her with a Defibrillator. this was done within a couple of weeks. Jack has not had any symptoms and his QT is not as prolonged as Lia but we have decided to have him fitted with one aswell, just to be on the safe side.When i took Lia to her check up it showed that the ICD had got ready to kick in but her heart went back to normal on it's own so it cancelled itself. I am so glad she has this ICD and i will be glad when Jack has got his. It gives piece of mind. One thing i forgot to mention and that is Lia is profoundly deaf aswell and this could be down to the type of Long Q T Syndrome that she has. Even though they haven't said i have got it. I am waiting for the result of the genes test we are all having to see if this is why she is deaf of if there is another reason.(the twins were born at 26wks, this could also be the reason for her deafness).
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Bionic Roadrunner
Posted on Saturday, August 16, 2003 - 10:19 pm:   

Cindy,
I have had 3 ICDs in twelve years, 3 shocks with the first one after four years because of a faulty lead, and 5 shocks with my third one in the last 18 months, all of them approprietly delivered due to ventricular fibrillatons. I was awake (even though it always happens at night)when they occured.
When my first one was in my abdomen, it felt like a terrible kick in the side, but it was over in a second.
With the new one in my chest, it feels like the sound of a loud gun going off in my head, there is like a flash of lightning and a feeling of warmth in the chest. Sometimes, it is followed by a headache.
Does it hurt? No, but it does scare the living daylights out of you as it is so startling and leaves you a bit shaky. In a matter of minutes, you are ready to hop up and go. After all, the beat goes on and so does life...

My last three shocks left me very anxious and I felt caught in a vicious circle where I was afraid to go to sleep as each move I made upon awakening triggered a very fast heart rate.
Since all the tests performed showed no abnormality, I took Valium to go to sleep at night for a few weeks, which helped me break the vicious circle. Whenever I woke up, it was a fight between my heart trying to speed up and my mind willing it to slow down. It was very hard at first, but I gradually calmed down and I am fine now.
You may need to talk to your doctor to help you with your anxiety. Remember that even if you are alone when you get a shock (Iwas once), nothing more will happen than if you were with someone. You are just as safe. Your defibrillator is your own buit-in paramedic. Don't be afraid of it. It is there to help you.
Hope this helps. Stay well!
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dorothy
Posted on Friday, August 29, 2003 - 05:30 am:   

does anyone out there have pain in their left shoulder blade due to the icd. ever since i had mine put in i have spasms in my left shoulder blade all the time. i wonder if it is from the electrical currents whenthe icd is computing. my problem is i keep having arthmyia attacks where my body wants to past out but then my pacemaker kicks in. i have been shocked once but my pacemaker keeps going off. my doctor wants to do an ep study and catherize the cells causing my arthmyias. does anyone know about this. i have been diagnosed with sad (sudden arrhythmia death syndrome), long qt syndrome and cornoray artery disease. i am only 46 years old. i am trying to get disablity. any comments about that. i think about this all the time. on top of all my heart problems i suffer from depression, herninated disk. please get the gun. ha! ha! if anyone can relate please email. love to hear from you
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Marianne Nichols
Posted on Sunday, May 16, 2004 - 02:23 am:   

I have only had my icd since January of this year, but the first week I was home I had two shocks. But both happened while sleeping. As of yet, I have not experienced one while awake.
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Michele Charlesworth
Posted on Saturday, June 12, 2004 - 06:49 am:   

I 've had dozens while awake. I get a few seconds warning, I feel dizzy, an aura, and then I'm out, I get shocked mostly while unconscious but I have been waking up to a second or third shock and it feels like you've been kicked in the chest. The hardest part is realizing that you have this illness all over again. Sometimes you forget you even have an ICD and then one day OUT OF NOWHERE you get a shock and go unconscious and it sets you back, AGAIN. That is how I feel.

What are your experiences with ICD firings? What happens before ? Are you still conscious? I would appreciate any feedback from anyone. I am struggling with this for 6 years now. I want to lead a normal life but I keep having shocks.

Thanks

God Bless US ALL!
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Kimberley Ashley
Posted on Tuesday, January 04, 2005 - 08:20 pm:   

I have been very fortunate that my ICD has not fired at all. I have had it for almost 5 years now. Although I am fearful of the day it happens, I am doing my best not to allow that fear to overshadow the relief that I feel knowing that it is there to save my life in the event I should have an abnormal rhythm. The idea of leaving my children motherless is so much worse for me.

My son had an ICD implanted in 2001. He was without incident for over 2 years. He is an active 9 year old and he ended up fracturing a lead, which subsequently caused inappropriate shocks. He suffered 3 shocks in the course of 24 hours before the doctors figured out that his lead was fractured. He underwent surgical replacement and 4 months later the lead fractured again and he unfortunately suffered 6 shocks in the course of an hour! It was terrifying for both of us. He clung to me in utter terror in anticipation of the next shock. I raced down the freeway to get him to the emergency room during which time, the defibrillator delivered another shock. Luckily his doctor walked in the ER at the same time as we did and he immediately disarmed the device. After much deliberation, we decided it was best to take the device out until he is older. He is now maintained on the atenolol and so far he is doing fine, but I live in fear that he has not got the extra protection the device offered. He has been suffering from panic and post-traumatic stress, for which he is now seeing a therapist. I bought a Philips Heart Start external device and he has been very concerned that the device is in our home. He is terrified at the thought that I may have to use it to save his life some day. It has been incredibly difficult for him. The panic that one experiences is very real, but what is the lesser of two evils?
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C. Garvitch
Posted on Thursday, January 06, 2005 - 05:26 am:   

Kimberley
We have an AED in the home. Our son Josh has LQTS He is 12 and was diagnosed when he was 10. We bought a device as we live a long way from ambulance etc and it would be unlikely that one would reach him within 10 minutes. His doctor explained to josh how they worked and showed him. Josh was also very scared about all that electricity. However doctor explained if he ever needed it used on him, he would be unconscious and never feel it. That made him feel i bit better.
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Lisa Baker
Posted on Monday, January 24, 2005 - 03:34 am:   

Dorothy, my son has complained of pain in his shoulder area also, as well as, down his arm sometimes. He has only had his a few weeks though. It is relieving to know there are others who know what it is like and that your willing to reach out to others. I am going to let my son know about your site.
Thank you, Lisa
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Lisa Baker
Posted on Monday, January 24, 2005 - 03:39 am:   

C. Garvitch, my son also was 10 when he had his first episode. He is now 12 and had an ICD put in on Jan. 5,05. It is terrifying and assuring at the same time to know my 12 year old has a pacemaker in his chest. It has been a rough road for him...very athletic, well he use to be. He does still play some baseball. How has your son coped?
Lisa
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C. Garvitch
Posted on Wednesday, January 26, 2005 - 04:55 am:   

Lisa
Josh swam twice a week at swim club, run at athleitcs and raced BMX bikes. Had his worst unconscious spell in middle of BMX race and of course had a big fall. He really likes racing around and was annoyed that he had to give up all the sports that he loved. However he has taken up archery, and learnt to play the piano and trumpet. Although he is not suppose to swim he does swim in our pool and body boards at the beach as long as an adult who knows CPR, etc is with him. We try to work around the LQT as much as possible so he can do all the things that he wants to. His school is excellent and makes accomadations and plans for him. We live in New Zealand, in Northland where every thing is very sporty and old door stuff. His class has learnt to sail last year and is learning to surf this year, and he has managed with a bit of planning and organisation to do these things.
However i worry about the teenage years that are coming up very fast and hope he doesn't get all resentful and rebellious and stop taking his medication or taking too many risks. His doctor always spends some time talking to with Josh about how he feels with Long QT and what he is worrying about and that helps a lot as he has built up a good relationship with Josh that hopefully see him through some of his concerns.
How does your son cope?
Carolyn
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jmac
Posted on Tuesday, February 15, 2005 - 05:55 pm:   

Dr Kanters:
I'm curious--what are the long term affects of ICD shocks on the heart? Does it weaken the muscle or destroy anything after time?
Jmac
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Friday, February 25, 2005 - 04:05 pm:   

The energy used is very small so the physical effect is negliable. The psycological impact of several shocks is much more important. I have seen several patients who have demanded that their ICDs were turned off, despite that this would lead to sudden death within a short timeframe
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Bionic Roadrunner
Posted on Friday, February 25, 2005 - 04:53 pm:   

The psychological effects of multiple shocks should be addressed right away. I have been caught into what the doctors refer to as "electric storm" or "flurries" twice. It is very frightening. The first time two years ago, I tried to ignore my anxiety but should have sought psychological help. Instead, I chose to tough it out, which proved in my case to be a very bad idea, because the fear lasted for months.
The second time, two weeks ago actually, after four shocks in a row, the anxiety came back. This time I found some wonderful help.
I will never consider my ICD turned off, but when you are in the middle of multiple shocks it is very tempting to do so.
Thanks doctor Kanters for pointing out the psychological side effects of multiple shocks.

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Jmac
Posted on Wednesday, April 13, 2005 - 07:02 pm:   

Just got back from Rochester New York and they will be putting ICD in me June 6. I was diagnosed 6 years ago, but no symptoms until this year. I am quite anxious, but not as edgy as I am about fainting and having LQT. I have been on beta blockers for over a year now and while much less than before, still have episodes every few months or so. There have been many opinions as to whether faints were related to LQT so we decided to go to a place that sees a tremendous amount of LQT patients and has done extensive research on it as well. I am confortable with decision, just scared knowing they have to put heart in V-fib to test device when in there.
JMac
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Stacey
Posted on Tuesday, May 03, 2005 - 12:24 am:   

I have had an ICD since 2000. I have only had one episode since it was implanted. I was playing softball when it happened. I had been feeling a bit under the weather and had taken some Dayquil and some other decongestant medication. Unfortunately, I had not consulted the "what not to take" list of medications. I was unconcious for the the first two shocks, but I definitely felt the last 10. Yeah, twelve shocks in a row. The medication had given the ICD a false positive reading (whatever that means). The first shocks were very strong and close together, but as they went on the shocks were less powerful and farther apart. Initially, I didn't know what was happening. I was laying on the ground and when the ICD would fire, my body would raise up off the ground. Just like you see in the movies when they shock someone with an AED. I was a little shaken afterwards, but physically I was fine. I didn't go to the hospital immediately, but did visit my cardiologist within a few days. My anxiety levels are usually pretty low, however, I do get a little nervous at airports going through the metal detectors and around other things that may set the device off. Things that I can't control. It has definitely been an adjustment for me, but I am greatful for the amazing technology that makes it possible for me to be here today.
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violet philbrick
Posted on Saturday, June 25, 2005 - 09:55 pm:   

i had an icd implanted in may of 2005 following a witnessed v fib arrest. no history of lqt, on no meds, still looking for a reason for the "event", as my family refers to it. i am 54, no health history, no family history of unexplained sudden death, so it is vey puzzling to me and to my cardiologist.i have been ct scanned, ep studied, blood tested,mri'd, etc., and no closer to an explanation. i have not had any "firings' of my device so far, and i am actually quite anxious about the whole thing. i appreciate reading the comments of others, so thank you all.
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CANN6655
Posted on Tuesday, June 28, 2005 - 05:56 am:   

VIOLET SAME THING HERE TOO! DIAGNOSED W/LONGQT THEN 6 MNTHS LATER ANOTHER EP SAYS VIRAL MYOCARDITIS. I DONT KNOW WHAT TO THINK BUT NO HISTORY OTHER THAN PATERNAL GRANDMOTHER HAD FAINTING SPELLS WHEN UPSET OR ALARMED.
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cann6655
Posted on Sunday, July 17, 2005 - 06:39 am:   

hi i wanted to ask a question of those that had mulitple shoks from icd. rcently i got hit with 5 less than minute apart. i smelled metal and could taste it. i also heard the difb go bank. i remained standing except for the last one and i went down on my knees. kick in the chest!!! much worse. threw my head back and my jaws hurt sooo bad. they say heart rate was 195. please answer
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louise dawson
Posted on Monday, August 01, 2005 - 03:16 pm:   

I would like to say i had my I.C.D fitted last september it has never gone off but i am still very frightened of the not knowing what it is like! I got diagnosed because i went to the doctor after my mum died in her sleep at the age of 30 and my brother then died at the age of 23 he died in the shower the only symptoms i have is i get that dizzy feeling u know when you are sat down for a long time then u stand up really quickly and go dizzy well i go dizzy about six times a day it doesnt matter what i am doing! But luckily i have never blacked out!
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Nadine Farnan-Beck
Posted on Friday, August 05, 2005 - 04:44 pm:   

Hiya, I have had my ICD for over two years now. I was diagnosed with Long Q T five years ago but have had syncope since I was 15 (now 31). Now my Doc thinks I actually have CPVT. On adverage I get a shock every two months (except at the moment as I am pregnant, and luckily as mine is usually hormone related I haven't had any shocks for a good 7 months).

The most anxious thing is not knowing what it is like. Once you know, you feel a bit less anxious. Believe me it isn't that bad, mine usually goes off when I am awake, only once did it go off after I had already collapsed.

It isn't that bad, its a bit like being kicked hard from the inside. It does hurt, but at least you know it is there to help and save your life, much better than having nothing for over 12 years believe me.

I was shocked with an External Defibb once, whilst awake in hospital (they didn't realise i had just come around), it's no where near as bad as that, that was like being kicked by a horse!

Cann6655 I have had only one multiple shock. Which is the one where I went clean out. I got up from seating, and got a small shock, which didn't work, I passed out and landed straight into a plate of glass that was in our hallway (note to everyone, don't leave stuff you can fall on anywhere in the house if you have a ICD). I woke up on the floor after a second large shock, which brought me around. luckily I missed most of the glass and only got a few shards in my back and right arm. My husband says if he is next to me he can hear the ICD charging up when it tries to shock me.

I only get anxious if I am alone in public. If you aren't feeling too good, make sure you tell someone and get them to sit with you for a while as sometimes the anxiety could just make you feel worse.

The only thing I am worried about is if it goes off before my baby is born or if it goes off whilst I am holding my baby postpartum. I am worried I may fall on the baby :-(
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m sevene
Posted on Thursday, August 11, 2005 - 10:45 am:   

This LQT is all new to me and it scares the heck out of me. Im still reading up alot on it. I was just diagnosed 2 months ago and know there telling me I have to get an ICD what a life changing effect this is going to be. Im a police officer and have been for 7 yrs and I love my job. They are telling me Ill probably have to change careers to what I dont know. Anybody have any uplifting advise
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Bionic Roadrunner
Posted on Friday, August 12, 2005 - 07:12 pm:   

Hello m sevene,
You sound like you are down in the dumps. OK! So you need an ICD. Well, let's look at the good and the bad. The bad is that you need it because you have LQTS. The good is that they discovered you had LQTS before it was too late.

Will the ICD changed your life? I don't think so. You will still be the same but you will be safer. If your heart decides to act up, you will have your own implanted paramedic and within seconds, thanks to a shock you will be just fine. A little shaken up probably, but you will get over it and will be thankful for being alive.

The good thing when it comes to LQTS is that we usually know what triggers the episodes. For instance, for me, it is mostly noises while I am sleeping at night. So at night time, everybody stays quiet, I do not use an alarm clock with a ring but one with the sound of water and birds. Swimming also bothers me, so I am always careful around the water. Stress is also a factor more difficult to deal with, but I try to stay away from stressful situation as much as I can.
For some people exercising competitively is dangerous so it is better to be very cautious to avoid adrenaline rushes.
Also, you are probably on betablockers to prevent arrhythmias, so if you take medicine and avoid your triggers, chances are that you probably will not be shocked very often.
Before you know it you will have forgotten you have a defibrillator.

I cannot tell you whether you will have to give up your job or not. I do not know the police force rules about this matter. That of course will change your life if they do not want you any more, but may be you could get a desk job?
If not, may be you will find a new career that will be able to use your talents.

I hope this helps you a little. I have had ICDs for 14 years (I am soon to have number 4...) and if it was not for them I would have been long gone. Keep in mind that we are the lucky ones. Our problem was caught in time, for some, their first episode was their last.

Take care and stay well.
Don't hesitate to write again if you need to vent or just need to talk.


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Michele Hazen
Posted on Wednesday, September 14, 2005 - 04:53 pm:   

My 34 year old daughter has had an ICD for almost 10 years. My 15 year old son died suddenly while playing soccer 15 years ago. My oldest son, 35 also has one. My daughter has never had an incident with her heart according to having read the ICD's over these years. Last Saturday while strolling with a friend through a field her ICD went off due to a faulty lead and fired 35 times. She is literally black and blue from it throwing her to the ground. They had to place a magnet over it at the hospital to get it to stop until they could shut it off. I can tell you that she is quite traumatized by this experience and has not opted to have it hooked back up. She has had trouble before with a faulty lead but it only went off like a siren with no shocks happening. She now has 3 leads in her heart and they say to put in another that they will have to extract at least one from the heart. They tell us this can cause her to have problems possibly also. At this juncture in time we are just waiting till she decides what she wants to do. The Dr's did tell us that it is unlikely she will have any problems while she is making up her mind since nothing has shown up at all as far as irregularities with the heart. What an experience.
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Gavin Costigan
Posted on Monday, December 12, 2005 - 01:41 pm:   

Hi all

My wife Sandra, 38, was diagnosed with LQT in October after fainting and has had an ICD implanted in November. She was continually monitored for 3.5 weeks before the implantation (due to long waiting time for the operation) and during that time she had only one episode of self-terminating ventricular tachycardia, which actually gave her no symptoms. Since the implantation 3 weeks ago, she has averaged about 4 or 5 shocks from the ICD per week, as well as other self-terminating VT. But she also feels faint from ectopic heartbeats and so she often spends the whole day frightened, thinking that she is about to get shocked. Over the weekend she had her nightmare which was a shock whilst carrying one of our two young children up the stairs - luckily she was near the top and was able to throw my daughter on to the top landing before passing out (and falling on top of her). But she is now beginning to get frightened to pick the children up - and they are too young (2 and 1) to understand.

The ICD clinic keeps fiddling with the settings of the device and changing levels of medication (beta blockers and potassium).

We are all at that scared period at the moment, although just reading this discussion board has helped me. I have some specific questions:

Does anyone have any experience of muliple shocks in the weeks following implantation which then settled down afterwards?

Does anyone have any experience of having to find out whether really young children (ours are 2 and 1) have LQT?

Any answers or just uplifting words from LQT sufferers or their partners would really help us.

Thanks

Gavin
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Nancy Y
Posted on Wednesday, December 14, 2005 - 08:16 pm:   

Hi Gavin
I had and ICD placed for similar reasons, but before they placed it, they did an electrophysiology study to make sure I didn't have other arrhythmia problems. I had a history of lots of ectopic beats and asymptomatic tachycardia before they found I had LQT (unrelated to LQT). They were able to provoke tachycardia in the EP study and found I had an A-V node reentrant tachycardia, which they ablated so that it wouldn't set off my ICD inappropriately. Did they evaluate your wife for other arrhythmias? Anyway, I have not had inappropriate shocks but would have if they hadn't done the work-up.
Your wife should consider genetic testing. Famillion in New Haven does it for a hefty price but some insurances will cover it. There is a 30% false negative rate and unfortunately I fall into that category. I had mine done with Boston University but I think Famillion might do a more complete analysis and I may redo mine with them. I have 2 children also (6 + 9yo) and it kills me not knowing if they have LQT also. We get them checked by a children's electrophysiologist every year (they are considered borderline) and if they ever find out my gene mutation, I will get them genetically tested.

I wish you well and hope things settle down for you.

Nancy Y--
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Bionic Roadrunner
Posted on Wednesday, December 14, 2005 - 08:52 pm:   

Nancy, are your children on betablockers? After I was diagnosed with LQTS, one of my children was diagnosed as "borderline" and the doctors thought it would be wise to medicate her.
She was tested genetically and found to have the same defective gene as mine, so I am glad that this decision was taken.
Best wishes.
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Nancy Y
Posted on Tuesday, December 20, 2005 - 06:35 pm:   

Both are on atenolol. Fortunately it doesn't seem to affect them like my metoprolol affects me.
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GMF
Posted on Wednesday, December 21, 2005 - 05:42 am:   

Gavin:
About 6 months ago, my family learned all about LQT courtesy of my 2-day old baby daughter's diagnosis. After a pacemaker implant and daily doses of Propanolol and Mexilitine, she's doing well. We were very concerned about the status regarding our 3-year-old son. Our EP persuaded us to get genetic testing for the answers ASAP.

We did our genetic testing (wife, daughter, son & myself) through Famillion. The genetic test for my daughter took 6+ weeks and then another 6+ weeks for the rest of our immediate family.
We received answers, both good and bad. The bad news was that my daughter has LQT3 (very rare & dangerous). The good news was that all three of us (wife, son and myself) don't have LQT3. Her EP believes my daughter is a first generation LQT Adventurer.

The ambiguity of the results are that all 4 of us have the same Class III Variant Found: This test result indicates identification of one or more genetic variants that have been identified previously in normal subjects or are considered common plymorphisms. Such variants are not likely arrhythmia syndrom-causing varients, but the actual significance of these variants has yet to be determined.

Unfortunately for some, the genetic testing creates more questions than answers. If you find an identified LQT Gene in Sandra, I would highly recommend testing your children. An LQT person has 50% chance to pass this unfortunate genetic disorder to every child he or she brings into the world.

Many other LQT families told us to be thankful that we discovered the problem before a sudden death! Although the last 6 months have been a rollercoaster ride with highs & lows, my family is more confident with our awareness & treatment! Keep asking the questions and pursuing the answers. Thanks to the Internet, you have access to medical professionals and LQT Adventurers throughout the world.

I've found that many people living the daily LQT Journey have provided invaluable information, advice and support. These folks can provide insight regarding ICDs, pacemakers, emotions, hospitals, doctors and etc. Just remember that each person's LQT experiences aren't exactly the same!

Even with LQT, your family and you have an opportunity to enjoy happy and healthy lives! There might just be a new definition of "normal" in your household.

Please feel free to ask me any questions.

Best wishes for Happy Holidays!

Keep Smiling!

Glenn
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Connie Fields
Posted on Wednesday, April 19, 2006 - 08:58 am:   

My husband had his ICD fire within three weeks of it's implantation. Since that time, I have called 911 two times and have rushed him to the ER several more times. He feels a constant heaviness in his chest and is in constant fear of the device firing again. I have tried to reassure him that the ICD is a built in paramedic, but to no avail. The doctors have prescribed ativan to relieve his anxiety, but the anxiety remains. I know the device saved his life--for that I am so grateful, but how can I get him to overcome his fear and live the rest of his life as it was before the device fired. He is extremely afraid of being alone. I can't afford to quit my job. Can anyone give me any insight into how I can help him? Thank you. Just reading this site has helped me tremendously. God Bless
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Jmac
Posted on Thursday, April 27, 2006 - 07:14 am:   

I feel knowledge is power. Does he do the internet thing? Possibly would help to hear from some that are going through what he is. I have ICD and when first diagnosed, was scared to death literally! Now I have ICD, I feel much safer although never received a shock so cannot relate to that. If you need help for other sites too, cannot have too many! ,let me know.
Jmac
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Connie Fields
Posted on Thursday, April 27, 2006 - 11:53 am:   

Jmac, thank you for responding. Yes, I have told him about this site and it has helped him some. I would love to have other sites to help him. I would appreciate your help in this very much.
Connie Fields
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Bionic Roadrunner
Posted on Thursday, April 27, 2006 - 10:36 pm:   

Go to www.implantable.com
This site is full of people who are ready to share their experiences, some are nurses with great knowledge. However, which ever site you get on, do not rely on it for medical advice. For this, consult your doctor.
Good luck!
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Bionic Roadrunner
Posted on Friday, April 28, 2006 - 02:25 am:   

I should have added that this site is monitored by a doctor, Dr Jorgen Kanters, a well known Danish doctor who is kind enough to answer our questions, so it a very reliable source of info when the answer comes from the doctor himself.
The rest of us, including me are well intentioned people who are sharing our experiences and some even have different types of medical degrees.
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Connie Fields
Posted on Wednesday, May 03, 2006 - 12:58 pm:   

Thank you so much!!!!!!!! What a great site. Such information. It's a comfort to hear from others that share the same concerns. I don't know how to say thank you so VERY much.
Connie Fields

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