Hi, my name is Debbie and I am 36 years old. I was diagnosed with Long QT Syndrome 7 weeks ago. My 3 children have also been tested and at least 2 of them are positive also. I was put on beta blockers but have not handled the meds well - too low of BP & bradychardia. I then had another heart episode while on the meds so I am scheduled for an ICD/pacemaker this Friday the 16th. This has been the most overwhelming couple of months with a lot of change for me and my family and I am glad to find other people who have been thru this all as well. My Dr. plans to reduce my meds once I have the ICD and pace my heart up to a normal level again so I can have enough energy to function. Maybe it won't all seem so overwhelming then. Right now I am hoping my kids can adjust to their meds better than I have. I am also a bit nervous about the procedure and recovery - we have a farm and 6 weeks is a long time to be off physical work! All in all, I'm glad to have found this group.

I'm approaching my one year anniversy for the icd. I have had 3 episodes and 11 shocks. I thought when I got 5 in a row the icd was broken. I sent download to doctors office and was told to get to the nearst hospital. We live in a rural area of Washington state. They changed my meds to amiodarone and coreg. To this point I've had know schocks since October. I'm so glad to still be here. Thanks to all the medical advances I should be here awhile longer. Hope evryone has a good day.

Mike E

My name is Gijs, living in The Netherlands, born 28 July 1950, maried, 2 suns who live on there own, one granddaughter, june 2007.
SCA on November 13, 2004, survived because my wife acted immediately, no measurable brain or other damage, apart from the trauma. ICD since Dec 21st 2004. Diagnosed as 'Idiopathic VF', no reason found, no cause, just out of the blue. Experienced shocks 2-9-2005 (2x), 5-9-2005, 31-12-2005, 20-5-2006. Then a long time nothing , but then again 29th December 2008 . Meds Sotalol, Coversyl, Ascal plus, since 2008, Metformine because of Diabetic Type II.
IT-professional since 1970, early retirement at 56 after reorganisation, another 'gift from heaven'.
Started a weblog august 2005, http://www.gijss.web-log.nl (in Dutch, Google-Translate available). Reason for it was that there was so little information on 'how it felt', technical a lot but emotional consequences - no - so I started. After people asked me wrote a book based on it, 'Life after SCA - with an ICD' - print-on-demand. Weblog is still kept at daily base, but little on ICD most of the time (yes, last shock was reported )
Interested in any news on 'hearts', also active in the Dutch patients organisation (STIN) - gathering / transliating (most) English news on ICD. Regular visitor for some time - thought it's time to become a member.

Greetings,
My name is Ernie Mansfield,I am 63 years of age and I live in Pukekohe which is 50km south of Auckland New Zealand.
I am married to Glenis, and we have 2 sons and 4 grand children.
I am a retired Engineer and spent all of my working life in food processing industries.
My main interests are reading and following motor sports.

I have a Guidant ICD which was implanted in March 06.

I have had 10 shocks from the ICD and still live in great fear of more. The shocks happened in lots of 5 on 2 consecitive nights. It really screwed my brain. Although I do understand that with out it I may not be here. Medical staff do not make you fully aware of what can happen with an ICD so when some thing does happen it is very scary. It is very difficult to be able to discuss it with doctors who say that the problem is in your head and just get over it.
I hope through this forum I will be able to comunicate with others in the same situation.

Regards,
Ernie

Hi! I'm Candi and I'm a 32 yo mom of 2 kids, 5 horses, 3 dogs and other assorted critters.
We live in Central Illinois.
I was diagnosed with Left Ventricular Non Compaction in Jan 2008 and received my ICD June 2nd, 2008 for prevention against SCD.

Hi,

My name is Dan and I am coming up for my third ICD replacement. My first was in 1997, 10 days before my 21st which I spent in hospital.

I have had around 15 shocks over this time, some while exercising and some while sleeping - all very character building.

I live in Brisbane, Queensland, Australia.

Thanks
Dan

Hello all,

My name Mike , I'm a 29 years old father of 3 (Mikaelyn 8, Michael 4 and Madisyn 20 months) , the last 12 years I have been a WELDER and crew chief for the family drag racing team and am currently in cardio rehab.

I got my ICD Novemeber 28,2008. I have never really had any heart problems but had had a few unexplained fainting spells every now and then over the last four years. On Nov. 22 about 7 pm I went to the ER with left arm, chest neck and ear pain. I was given a EKG where then the Dr. stated i was showing signs of a heart attack and placed me in the trauma room and got me ready for transport to another hospital for a heart cath. Upon arrival at the other ER i was meet by the cath team and a heart cath was preformed which was negative of any blockages. My wife was then told that everything was good and they was going to keep me for observations so i was placed in CCU which my cardio dr had to request instead of the recovery room. He stated that "something didnt seem right with me" . at 1am that Sunday morning i went into VFib and SCA which included a CODE BLUE. After 1 shock i was back on track and the nurses told me upon calling the cardio dr. he was releaved that he had placed me in CCU. I was then breifed on how important me going to the ER that night was and potentially saved my life. I was then met by the EP dr. and was briefed that I needed an ICD . Upon askign about the device I was then told that my career would potentially be ended as a welder once i have the device. I recieved the device and was released on the 29th. I'm still undergoing rehab and am not sure what my future holds as far as a career in which ive eben at my current job for 9 years.

I was implanted with a Medtronic Secura DR and have yet to have any shocks but it helps knowing its there if i do need it.

Thanks
Mike
im pictured in the middle

Hello, I'm Janne, a single Norwegian female, 59, living countryside not far from Oslo.

I had my ICD implanted in March 2006 when hospitalized after episodes of PVCs, skipped beats and a fainting spell. Diagnosed with heart block and also ventricular tachycardia, otherwise a normal heart. I had a pacemaker implanted, which had to be replaced by the ICD due to a VT at 300 bpm when I was clearing my room, just about to quit the EKG monitoring (telemetri) and leave for home!

I haven't had any zaps until two months ago, when I experienced an "electrical storm" due to lots of VTs and VFs. VTs also of Torsades de Pointes type. ICD interrogation showed I had suffered a total of > 70 events in to days: VTs both sustained and non-sustained and totally 9 VFs. I was put on Amiodarone IV 24 hrs and then pills. After staying at home for two weeks I had another zap, so I had to double the Amio dose to 400 mg pr. day. My cardio probably was redusing the dose too fast, from 1200 to 200 mg in less than 2 weeks during hospitalization; at least that was the explanation given by my EP.

Apperantly I have no ischemia/vascular heart disease, EF is good, 67%. May be LQTS or ARVD/C. Gene tests are pending.

Passing out before each zap, I didn't feel any pain at all

Best wishes, I aprecciate being a member of the group,

Well folks after a very traumatic week finally our daughter is having an icd fitted.
The story so far
Our daughter Tracey dropped her car off at the local mechanic on mon 19 jan, went back in the afternoon to pick it up and just collapsed in the office, luckily the mechanic knew cpr and did that until the ambos turned up and gave her a couple of zaps to get her heart working properly again!
A few days in icu in an induced coma and she wakes up, a bit disoriented and not knowing what happened, out of icu and into cardiac where the dr put her under and gave her heart a few shocks to see if an icd would work for her, as it turned out she does have some underlying condition but they dont know what caused it yet, so they booked her in for an mri on mon 02 feb, after that they said they will install an icd prob wed or thur and hopefully the mri will reveal what caused her heart problem!
She is a normal 21 yo thats full of life and can be very headstrong when she wants to be, loves partying but isnt a boozer or drug taker (her friends say she is the straight on of the group), anyway after the scare she gave us all seems well and the icd will at least stop this from happening again!
I will try and introduce her to the board but at the moment she isnt too interested in forums or support groups (doesnt like the idea of meetings with 40 and 50 yo).

cheers

Greg

Hi everyone. I am new. Sudden death 10/06. Asystolic 40 min. Previous myopathy and coreg. Now ICD and tried 2 anti arrthymics.

Having 2nd ep study tomorrow as last years was a failuer to induce. Ill be awake for this one. I may also get a 2 lead box as my shocks come at night or at the computer when i go below 40 or a PVC gap causes average HR to go way low and I get a pace the off to the races.

Has anyone heard of this?

Ill check in after the proceedure which hopes to find Rt BB reentry.

Paul. M61, former endurance athleat now a Sunday school teacher.
Intrests -science, philosophy, investing.

Hi everyone- My name is nancy, and I'm a new member, 47 years old, married with 3 kids-ages 20,17, and 14. My father had ARVD and was transplanted 12 years ago, and is now almost 80 and doing remarkably well. I had symptoms going back to my teen years, but the disease had not yet been identified.
I was treated with beta blockers and antiarrythmics, which I then went off as my husband I wanted to start a family. Blessedly I was fine for the next 9 years or so. When a 2nd cousin died suddenly and upon autopsy was found to have ARVD, i revisited my cardiologist and was found to have ARVD. My first ICD was implanted in 1998, and I have had 2 replacements, 1 of which was due to a recall.My current meds are tikosyn, metropolol and enalapril, plus wellbutrin and ativan as needed. I have had a couple of single shocks, which weren't too bad, and then a storm in 2003. The storm(appropriate- was in vfib, and it took 5 shocks to get me out of it) did quite a number on my head-major problems with anxiety, and at times depression, a nice case of PTSD. In many ways it has been a very long and difficult road, but at the same time has been a blessing in terms of helping our family stay focused on the things in life which really matter, and appreciating what each new day brings(most of the time

Nancy

Hi, my name is Sherri from Reading, PA. I had my ICD placed one week ago, today (1/28/09). I am the widowed Mom to three teenagers. A son, age 18, and twin daughters, age 15. Also a Mom to a 4-year old Lhasa-Poo, Missie, and a kitty, MiMi (aka Baby-Kat). Feel thankful to have found the support that I am looking for and look forward to being a part of this group.

Sherri

[b] Hello, My name is Mary. I am 46 years old and just recieved my ICD in June of 2008. I never had a shock, but I live in terror of one every day. any time I feel an irregular heart beat, or I can feel my heart racing. I am married and have 2 grown children. I am a Navy veteran. I have dialated cardiomyopathy, and went into heart failure for the first time when I was only 24 years old. Cardiomyopathy runs in my family all 3 of my sisters have it, and one, my younger sister died of it very suddenly when she was only 42 years old. I am very happy to have found this website, but I am very dumb when it comes to figuring out these posts and hope that I am doing it right. I'd be happy to speak with anyone with a story to share.

Hi,

I'm Stephan, 33 years old, married to a beautiful woman and living in Surrey, UK.

I was diagnosed with HOCM back in 2001 where my cardio put me ion Rhythmodan and managed to maintain my life as a personal trainer and sports massage therapist for much of the past few years with no episodes.

In October 2007 aftyer a gym session exprienced syncope which lasted intermitently for a week at which point called emergency services and ended up in emergency. Had an ICD implanted (not sure what make) as a results of a AV fibrulation? and also put on Bisoprolol.

So far no shocks (touch wood) althouhg still in the phase4 of being petrified everytime I feel a thump/bump or funny beat (does it hurt?)

Great to meet all of you!

I am very into exercise (I know it's 'partly' contra-inticated but keeps me sane) so look forward to chatting to anybody with experience in this field - especially around supplementation with creatine. I have been doing some research around this and it would seem that people with HCM/HOCM have decreased creatine levels - therefore what would be the benefit of creatine supplementation/what would be the risks etc. Also love martial arts and looking to get involved so anybody with advice / thoughts experience on this side.

I am a training professional as well as life coach which is my career so If I can be of assistance in this repsect let me know

Stephan
Helath, wealth and everything else

Hi All,

My name is is Tom and I am a retired university professor. Some years ago I practiced medicine and am trained medically as a Physician Assistant. I have a fairly extensive history of heart disease - coronary artery disease, CHF, arrythmias of the atrial kind and most recently have started a couple of episodes of V-Tach. Although I have had 9 coronary angiographys and numerous stents as well as one MI and open heart surgery, my ICD implant was done on New Years eve and has given me a whole new range of questions and concerns.

I appreciate your welcoming me to the group. I am mostly a lurker but I do have many questions. I will probably sponge off of most of you veterans as I probably have little in the way of cogent information to share, being a newbie at this.

My wife and I live in Cincinnati, Ohio....we moved here from Orlando FL. (One may conjecture about the mental defect that caused us to do that).

My hobbies are computers and photography.

Thanks again.