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LQT with an ICD- anyone out there?

jencava
0 Recommendations

Hi. Is there anyone out there who also has LQT and has a defibrillator? I am a 34 year old. female, mother, and wife, and had a cardiac arrest 3 months ago and a week later received an ICD after finding out I have long QT syndrome. It was all very much a shock to me and my life has been an extreme adjustment. I am now taking medication, but I live every day in fear and I am still not comfortable with the ICD. I would love to have someone to talk to about this or even just words from others who have experienced the same thing.

Explore topics in this discussion:

Exercise Heart transplant Heart failure Surgery Gabapentin Sudden cardiac arrest Burns Cardiomyopathy Long QT syndrome Anxiety Hypertension Pain Memory Pacemaker Heart attack Depression

19 replies

sgriggs89

I'm still getting comfortable with the ICD that was implanted in early March after my SCA. I completely understand your fear and adjusting to a daily routine that now includes medication. Feel free to contact me if you'd like to talk more.

Brianne

Hi. Being a young mom with LQT and an ICD I completely understand your fear. I too survived a sudden cardiac arrest. For me, only time reduced my fear. (I had my event almost 2yrs ago) It is wonderful to find comfort in others here. I am happy to talk with you more as well :o)

jencava

Brianne- thanks for the support. Have you ever had your ICD fire? That is one of my big fears. I also am unsure about what I can and cannot do, such as exercise. I feel like it is good to exercise and healthy to do so, but I fear that I don't know where that line is of it being too much.

costello

Don't fear about your ICD firing, it's there to keep you alive! I too have long QT syndrom and had my SCA in May 08. Until everything was adjusted, ICD, heart rate, medications, my ICD fired 40 times (but I needed it). Now it has been over six months with no incident, don't let it scare you!!! Take care, you are now a part of the big family of survivors. Pete

mrsaa

Hi SCA happened to me age 45 May 2008 with no warning. 15 mins no hbeart etc etc and then 10 days after waking up 7 days after SCA in ITU I had an ICD fitted. before it happened I was super fit, super Mum, super boss etc you name it I managed to do it all.
I must admit I have found the device hard to live with. it hurt for 8 months and i now take gabapentin for the nerve damage that was caused when it was implanted. I still can't have my bra strap touch it and it does stick out. I have had lots of infections around the device and some periods of blacking out . But device has only fired once and to be honest it was reassuring to know it works. Sounds daft I know.
I have 3 kids and youngest 2 are both autistic so know how you feel. we are waiting for results of genetic tests to see if they all have this prob too. it does worry me as to most people i seem a survivor and to have acceoted what happened and what I have but i am fearful for the kids and I just like you am not that together over al this.
All I can say to you is.. some higher being decided we would survive and science allowed us to have this device to make sure we stay here. I try to take things a day at a time now and usually I fail miserably, but I try. I also try not to get fraught about things but again I usually fail but I try. We are moms and we have to try and carry on making our kids our world and I do find this does help. Soemtimes when I just wish they hadn't brought me back to life, one of my kids will give me a hug and say I love you and I know why I am still here. Sometimes I hate what I have become and what happened to me but I adore my kids.
it isn't another chance for those of us who are relatively young as we still have to deal with the same stresses and issues we had before it happened and we are expeced to just carry on and often I find unenlightened medics treat us as freaks. But make your cardiologist your friend and if you don't get on with him find another. I am lucky.. mine is great and has become a critical friend as well as my Dr.
Hang in there keep posting on the site.. the team here have kept me going and inspire me.
we are here for each other please please remember that

Age xx

jencava

Thank you to both costello and msraa for your feedback and comments. It is so reassuring to hear these things. I'll be honest, I too have times where I wonder if it wouldn't have been better if I just died because I honestly don't know if I can go the rest of my life (I am 34) wondering how things are going to turn out. I am also so afraid of it firing and how that will feel. And, the ICD itself seems like it isn't fitting in my body. It sticks out really far and itches and stings and the skin is stretched tight over it. I am trying to be positive about things, but it is so hard. Thanks for your words of encouragement.

Tammy1

Jencava,
It took a long time for me to get use to my ICD. It was another several months before I could lay on my left side and get back to being 'normal'. We all go through that, 'why did I live' moments and worry how things will turn out. My father-in-law put it best; Things will work out because God put you in the right place at the right time to be saved. You husband and child(ren) are very fortunate to have you survive. Just be patient with yourself on recovery, it will take a while.
I was 37 when I had my SCA and ICD placement. That was 2 years ago. I am a wife, mother and survivor like you. I have Long QT type 3. My symptoms are bad, have been for years but only diagnosed after my SCA. I black-out and pass-out daily and my device paces me out of rhythms several times a day. I am thankful that I am here, getting to see my kids finish high-school and go to college and celebrate the arrival of our first grandbaby in the fall.
The worst part about this whole thing is knowing I have passed this on to a few of my kids. My son(20) and a daughter (18) have tested positive for long QT and another is having her EP study on Monday 8/10/09. She is only 17. This upsets me more than what is happening to me.

jencava

How do you find out what type of LQTS you have? Is this through genetic testing and does your insurance cover this? I feel like my doctor hasn't been any help in giving me information on how to get tested or get my child tested and I have no idea what type I have, if it is genetic, etc.

Tammy1

There are about 12 different types of long QT, Som insurance companies do not pay for it and it is very expensive. The EP study tells the Dr more than I can explain. Diagnosing is based on symptoms, EP study and the genetic study is used as diagnosing and confirmation of the diagnosis given by the Dr. at the time of the EP study.
Hope this helps. Sometimes you have to push for a Dr to listen to you and fight for what you think is needed. That is what I had to do and after over 20 years of misdiagnoses I was only taken serious AFTER my SCA and after I got mad and pushed the issue. My children are being tested because I finally found a Dr. that took me and my situation and concerns serious.
We are starting the genetic testing process. We are anxious to know for sure this is what we have.
Good luck to you and your family.

OhioMom

I have the long QT as well. I have HCM but luckily no symptoms. Got the ICD as preventative. I am appreciative of the ICD. I think if I didnt have it I would be a wreck.

Lydjahh

I am a lucky survivor of SCA caused by LQTS. It took years and several cardiologists to diagnose me. I was lucky to live to age 52 without dying. Once I was diagnosed, I had to wear an event monitor and call in my heart rate data daily and whenever I had symptoms. I was a nervous wreck when I was diagnosed I had spent years dismissing those irregular beats as anxiety as that's what I was told. I did NOT want a diagnosis! I was wearing that monitor when I died. I had been to the ER earlier that same day! Once I came out of my comatose state and dealt with the pain from the CPR trauma and the defibrillator paddle burns, I had to get used to having the ICD. I remember yelling at my husband for giving permission on my behalf to have it implanted! Admittedly, I was traumatized and not thinking rationally. Now, nearly 3 years later, I am on a good medical regimen and my device has fired twice. It is under the fascia layer and barely sticks out. Some days I forget it's there but am thankful that it is. I might add; the shocks were not painful, simply startling. I am blessed and so are you! We are alive!!!

sonia_66

I am new to this group and have read through alot of posts and am truly inspired by the courage and support from members sharing their personal experiences with their journey on trying to live a normal life. You have all inspired me to go on and have given me hope. You are all amazing people. I too have been given the option of ICD insertion because of being diagnosed with heart failure. I am at great risk of SCA only because of the numerous attacks of palpitations, which come with chest pain, shortness of breath, hypertension. I don't know how many more episodes of 200 bpm I can put up with. They are so exhausting. My cardiologist has decided on cardiac ablation then ICD insertion as my best chance of survival. I have severe left ventricular systolic dysfunction, which may result in consideration for heart transplant down the track. My LVEF is currently at 20%. I have two kids, I am 43 years old and my heart condition has been discovered since my (TIA) transient ischaemic attack back when I was 33, which was put down as a possible undetected heart attack or cardiomyopathy. I recently had a CT coronary angiogram which shows absolutely normal coronary arteries. I don't know what to expect from having the ICD but have read alot about it feeling like a horse kicking you in the chest if it were to go off. I couldn't imagine how painful this would be. I'm afraid I will be living in fear more than I do now without one!! What advice can anyone out there give me?

mery

Surprise to me as well. 5 1/2 years ago. It takes some time to get used to it, I also just had my first replacement surgery. It does sound funny to say it's a relief when it fires, but it is. If it didn't I wouldn't be here. Although mine has only fired a handful of times, and most of those when I was sleeping, I'm sure glad it did. :-)

This is a good site with wonderful people. I'm glad you've found us.

jencava

Mery,
Thanks for the reply. Regarding your replacement surgery- how was it compared to when you first had the ICD put in? Is there recovery time and soreness, etc.?

VMP

YES !! Have Long LQT Syndrome & low (25%) EF. Had SCA in '07 plus three CHF episodes, an ablation (9 hits), cardioversion and assorted drug trials. I am 77 years old and have survived very well so far. Your ICD is your life now. I also have implanted the recalled wire which is working and cannot be removed safely. My greatest concern with this is facing a replacement of the ICD in 2 to 3 years.
I was on Amioderone for about 14 months and did not feel very well at all. Was switched to Sotolol and my quality of life has improved. If you are on the former, suggest you ask you physician about the feasibility of switching.
Hope everthing works out well for you.
VMP
P.S. Have had electro problems since 1996 with first implant being a Pacemaker in '03.

mery

To be honest, I don't have any basis for comparison. I do not remember the initial surgery. I had my arrest on a Wednesday, and the ICD was implanted the following Wednesday. My last memory is the Sunday BEFORE the arrest, and the first one afterwards, is waking up in the CICU room and trying to get my brain to figure out where the hell I was. I was staring at that board that's in all hospital rooms, on the wall, listing the RN, the aide and my mother's and sister's names and ph numbers were on there as well. I'm like WHAT?? HUH?? :-) This was on Thursday, following the placement surgery the day before. After spending a few hours with a shrink, the cardiac docs, and my family, I was moved into another room and released the next day. I still have no recall of any of those 10 days. I know what my family has told me, that's it.

So the replacement surgery, I DO remember. :-) It was not so bad, they knocked me out in the OR before I reached panic stage, which was quickly coming on. I am still a little sore, not to tender anymore. I think the continuing soreness is because I'm starting to do some things again, exercise way. I had the follow up and my doc says everything looks good, it does. Except she didn't go in the same spot which I was expecting, she sort of crossed it, so I tell my kids I'm an X-man now. Doc said scar tissue was an issue, which is why she didn't go in the exact same spot. It was not bad at all, I spent one night in the hospital, to make sure I had no problems of any kind. Been doing good since then.

edmar

hi, i'm 37 years old and just got my icd may 2009, with the diagnosis of LQT and due to my low potassium. i passed out at work and was rushed to the hospital, and was admitted for 12 days. the doctor found out some irregular heart rhythm, and very very low potassium, doctors and nurses said i'm lucky to alive.
on the 3rd day they told me that i should get the icd device to protect me for future attacks. i was shocked and i can't even accept the fact to have a device, i'm thinking that time its only for older people, but my cardio and the nurses explained me well about the use of icd. well, its been six months now, and i'm not yet comfortable with it, since i'm petite, i feel the device is pinching my skin, i can't even lie on my left side and scared of being shock, but i haven't experience it yet. and also i have a bilateral adrenal adenoma, and this is the next problem i'm facing, the doctor said it might be the factor of my hypertension and long QT syndrome,i'm schedule for surgery for the adenoma. is any one has a problem like this? i'm so worried and scared.

agibson30

I am a 34 year old wife and mother also living with an ICD after experiencing heart failure 8 months ago and being diagnosed with LQT Syndrome. I had a few months of depression, weight gain, worry, anxiety, fear. It has been really hard adjusting to the reality of living with a device in my chest that I can feel all the time. I would love to penpal with someone with the same issues.

wibbi

I live with LQt syndrome since 12 years now, first i just had an pacemaker and i was living very well with it. but 5 month ago i had another episode so they implanted me the icd. its bigger then the pacemaker and its not comfy sometimes to lay on that side but i get used to it every day even more, its good to have a lifesaver like the icd. I take betablockers with it. so far i can do everything i was doing before, just not certain sports or super stressy situations. I am happy to be alive.

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