My name is Ronny from Sweden (sorry if my english fails sometimes).

I'm 45 years old and received my ICD one year ago.
I got a diagnose of ARVC last year and got the ICD and also take beta blockers. Everything started when I was on a business trip to NY, USA. Suddenly in a meeting my heart started to race and I was not able to calm it down.
I was taken to a hospital with ambulance and stayed there 2 days while the doctors tried to figure out what was wrong with me. They suspected ARVC quite soon and gave me some pills and maked sure I could take the flight back to Europe.
I was instructed to contact a cardiolog in Sweden to have a correct diagnose and correct treatment.
As soon as I arrived in Sweden, I contacted the local hospital. The cardiolog team there verified a suspicous ARVC after several tests.
The medical team suggested an ICD implant and beta blockers which I accepted.

Everything went very fast for me. I have always been healthy and suddenly I was facing a heart disease.
I have never during my life been treated in a hospital and never used any medicals on a permanently basis.
My wife and children was shocked and didn't understand what was going on. The hospital also wanted to check my children because this disease may be inherited.
Suddenly I was forbidden to drive any veichle for a period of 3 months after implantation.
I was also told that if the ICD fired off during this period, they would extend this period with 3 months from that date.

One month after the implantation, suddenly one day my heart begun to race and my ICD paced it down.
And I got 3 months prohibition from that date.

I was in a shock state and wondered how my life would end up.

I decided that life is too short and this device should not control the rest of my life. I would live my life as before. Do all things I used to do.
And I do now. I even play ice hockey.

Everything works fine now and I live a normal life.
Some weeks I don't even notice my ICD. My ICD have never fired off for me and my doctor say it may never fire off.

I joined this community to share my thoughts with other people and listen to people about their experiences of having an ICD.

Ronny

Hi! I'm Gabriella... I live in Oklahoma, and I am 23 years old. I've had an ICD since I was 16, and got it replaced (Medtronic recalled mine) at 18 and will get my third this winter. I have the ICD as a result of Long QT Syndrom, Bradycardia and CHF. I am a corrections officer working on my degrees in Sociology and Psychology. I have a full time job, a part time job, and go to school full time. I am rarely open about my heart problems.... and thought this might help me come to grips with that. (Even though I've been a heart patient my entire life, I still have problems admitting that!)



There's me! -Gabriella

Hi I am Greg.




Triple bypass on 1-23-06
2 Medicated Stents on 6-16-06 ( Boston Scientific TAXUS Express2 MONORAIL 3.5 x 16mm )
Medtronic Defibrillator on 4-17-08 ( VIRTUOSO VR D154VWC / SPRINT QUATTRO SECURE 6947-65 cm )
LVEF < 30

The heart attack did a lot of damage to my heart. They told my wife I would not make it.
Had a crash cart next to my bed most of my stay. I was in a coma for over a week.

My Cardiologist said I qualify for a heart transplant but instead of going down that road we are trying the ICD first. It should keep me alive.

I am 51 and still working full time. Good thing it is computer work. Still very hard to make it through the day.
Seems I am either taking pills, eating or sleeping. I fall asleep a good deal.

Coreg, Digoxin, Cozaar, Digoxin, Furosemide, Potassium, Lipitor and Nitroquick as needed.
Oh. I also take one Bayer Aspirin and one Multi-Vitamin.

I was on Plavix but do to bleeding problems I had to stop Plavix.

I have been reading this board for over a year. Might as well join the group!

That's all I can think of.

Greg

Hey everyone my name is mike and i'm 33years old. I've been diagnosed with dilated cardiomyopathy, i got my ICD implanted on April 14, 2008. It's great to know that there is a forum like this. Had one zap from jogging but the beta blocker have seemed to put and end to that. Looking forward to living my life the way i choose. I've never discussed my heart problems with anyone thats just the way i am, but maybe this is a good thing! Take care.

Hi, I'm Mike and I'm 45. After a VT episode (HR > 210 and walked into the ER), I had my ICD installed in Oct '06. They had to shock me with the paddles with no medication (I just had dinner). Ouch! The worst part (besides the shock) was that they forgot to plug it in on the first attempt. The ER doctor was furious! It was like a bad comedy.

No shocks until this Jan '08 after drinking too much. Since then I've had about 5 VT episodes with my HR > 140 but less then 190 (the "watch" zone) with several not-so-fun trips the ER. I always feel it sort of "click" then start pumping away madly. I never faint, but can walk around when it is happening. One time it happened up in Tahoe (6000 foot elevation) and I did nearly faint.

In June I had an ablasion which wasn't that bad. (They sound horrible, but you really don't feel too much). For some reason I thought my troubles were over...

This past July/Aug I was on an extended vacation with the family in NYC and Boston and had 2 shocks within a week! Was admitted to Mass Gen Hospital and that ended our summer trip Since then I have been pretty psychologically traumatized thinking about if/when the next episode will be. I just went off the amiodarone and beta blockers with no meds until the end of October when they will try a 2nd ablasion. My EP told me the best way to know that the meds are out of my system is for another episode...great. I'm praying this one succeeds but it is such an inexact science.

This board has really helped me to see that there are folks under 50 with these same problems. Whenever I would attend the local support group I felt so young and that nobody else was anywhere near as young as me. I've seen you real youngsters here, so I know we are not alone. Some of the posts I have seen sound exactly like me.

I'm still somewhat depressed. I really have trouble falling a sleep since nearly every episode has been when I'm lying in bed or on the couch. Could be worse for sure, but no sleep and lots of stress only make you more nervous. I'm starting to learn to live with it but as you all know, I think you just learn to not let it slow you down.

Thanks for listening and I hope to learn and post more.
Mike

My name is Gail and am new to this website. Am pretty much computer disabled, so if something not right here, its my lack of knowledge. I had my first ICD installed this past July. I am getting used to this thing implanted. I have had several interogations since this was installed, by both the company and I also have a home unit as well, which I think is pretty cool, so far. I have not had any therapy from the ICD yet (not looking forward to that experience). I am enjoying reading was has been said on this website and learning a lot.

Hi, I'm Erin. I'm 27, almost 28, married and I have a 2 year old son. This is my story. I had my Boston Scientific ICD implanted July 30th '08. June 25th I was with my family watching T.V. when I felt funny. I passed out and woke up to my husband on the phone with 911, he had done CPR as well. I had no idea what happend so we went to the E.R. After a few hours they decided to let me go and about 20 minutes later they were in my room to tell me they were keeping me, found something else in my blood work. After about 2 hours on the observation floor my nurse asked if I was ok. I felt like I was on a roller coaster but I figured it was because I was nervous. Evidently it was V-Tach. I had several unsistained runs so I went down to the cardiac care unit. After 6 days there my cardiologist decided the best and most aggressive treatment would be an ICD device. After 2 uneventful check ups and taking my beta-blocker for 2 months I thought I might be in the clear. Then I was cleaning the garage last friday, 9/12, and I got dizzy. A couple seconds later I got the shock. Man, it hurt! I cried out and turned to leave the garage and next thing I knew I woke up on the floor. My glasses were broken, my eye was bleeding, the inside of my bottom lip was torn up and bleeding and I had various bumps and bruises from my forehead to my knee. Luckily I had sent my son to play with my sister for the day so I could clean. My V-Tach was not all I had this time, I guess I went into Toursades (sp?). After the first shock at 14jewls didn't work I lost conciousness, then the second at 24j didn't work either so it went up to 31j for the 3rd shock. That one worked. I only spent the night in the hospital, they did some tests and watched me. Today I had my follow up and there are no answers to be had. Our best guess is each episode followed an illness. Both times I had been sick a few days before, and I guess my body doesn't handle having low potassium. That and most likely I have long Q-T syndrom. We are checking my potassium weekly now, and I am no longer allowed to drive. I'm not sure how I will handle that. We also adjusted my device to shock at the highest, 31j, as soon as I have a problem again.
Long story, but this is all so fresh and scary. I thought reading other's experiences and stories would give me some strength. So far I was right. I hope to post often and will keep on reading.

My name is Marc, I am 37 and live in the NJ just outside Phila. I just had a Medtronic Spinal Stim unit put in on Aug 22 2008, to help with chronic pin in my legs due to a spinal surgery 5 years ago. so far things are good. Hope to hear from some of you who may be close by. Would like to start a support group in this area!

My name is Tracy, I am 24 and I live in Portage, MB, Canada. I am married with two little sweeties, Alexis and Elizabeth ( ages 2 and 1) My husbands name is Chris. All I can say is my life has been very interesting!! But because of God, I am still here to tell about it!! WOOHOO!! Anyways, When I was 8 years old, I was diagnosed with Ewing's Sarcoma (cancer) . I had a tumor (appox. size of a grapefruit partially in my lung) removed and then my parents were told about the news. They had given me a 30% chance of making it, but I guess it was a lot worse then I have thought at the time. I went through 4 months of radiation, and then about a year of chemotherapy. My heart had been enlarged due to the chemo, but after a couple of years returned to a normal size (woohoo again) I remained really healthy until my 2nd pregnancy which was during 2007. In January, the Doctor had diagnosed me with pnemonia, but then everything seemed fine. 3 days after the birth ( June 7th) I went to the ER because I couldn't breathe. Anyways, I had another brilliant doctor ( slight sarcasm, but atleast they did figure it out before it was too late) diagnose me with Panic Attacks. So, not believing it, I called my cardiologist from back in the cancer days. After a muga, an echo, angio, and you know the rest, I was diagnosed with post pardum- cardiomyopathy. My ef as of this june (2008) was 16%. I had and ICD put in almost a month ago now, and I am confident that I will be ok, and get to watch my little family grow up!! (woohoo) Well, thats my story! I really am enjoying being here, and I am encouraged by all of the stories I have read.

Another Canuck here; I'm Craig from Saint John, New Brunswick, Canada. I hope I'm posting this introduction right (used the "post reply" button). I'm 49 years old, married for 25 years to a great gal, and have 2 sons (aged 23 & 20; watching their antics keeps life very interesting); I had my icd implanted Aug 28 this year. No problems with wound or pocket (yet) although it feels a bit funny to have something the size of a Zippo lighter in my chest.
I'll try to keep this short: in August of '98 or '99 I had a serious bout with pneumonia (have had asthma all my life and pneumonia at least 3 times during adolescence). Was hospitalized for a week this time but never really did spring back all the way from it and was SOB all of the time. Tests revealed an enlarged heart, cardiomyapathy, and I was diagnosed as chf... for several years just took quinapril,digoxin & lasix, besides my asthma medication. The chf seemed to gradually get worse over the next few years; about a year ago I had trouble with the chf and was hospitalized again; they, found periods of A-Fib and VT; was put on several meds including carvedilol (that stuff really sucks the energy out of you some days) they suggested disability and and icd. My job of the past 27 years has been as a power plant operator, the last few years as a Shift Supervisor, but I can no longer handle the shift work or the amount of walking & mobility required. Fortunately, my company gave me the opportunity to work from home writing up training material. I occassionally go into the plant to take pictures and do research for the training material, but am now stuck at home. Until I can positively determine any potential interference problems to the icd from high voltage transformers, motors, generators, etc and how much distance I need to keep myself from them.
I'm quite sure I'm not the first power plant worker to have an icd installed, so I'd love to hear from anybody that knows something of the interference problems. The Medtronics help line had informed me that most companies generally take readings around their electrical equipment (mine is trying to carry this out).
The long & short of it.... I always loved my job, and it sucks not to be able to do it. I still enjoy life, however, and I don't feel the icd is going to get me down or depressed... hey, I'm still kickin' around on the top side of the turf! Mind you, it's only been in there a month. The only bit of a drawback is that I'm left-handed, and it's on my left side. I guess if I go hunting, I'm the camp cook as I won't be able to shoot from that shoulder.
I've rambled enough... Craig

I always forget I'm not the only one from Oklahoma here.

I have had my first shock, so the reality of this disease has finally really hit home.  I was diagnosed with cardiomyopathy in 1999 and been on medication since then and had my Biventricular Pacer ICD inserted in February 2006.  I have I suppose come to terms with my disease, I live a pretty contented life and although it does not reflect what I used to do 9 years ago, it is sufficient for me now.  I decided, and I now know, wrongly, to do some gardening two days ago.  I decided to get some fancy pebbles to put in my front yard, and then when they arrived decided to spread them around myself.  It took me three hours to move the metre square pile of rocks, I would do some, rest on the chair I had set out on my front varandah, and have a drink and a rest and then do some more.  I was so proud of myself, I was not a useless female and able to do something I wanted to do myself.  I finished the job, was very proud of myself, moved the car into the garage, cleared up and the mess and then came into the house.  The message was blinking on my answering machine, so I pressed the play button and as I was standing there listening to a good friend invite me to a bbq, thought that the answering machine had short circuited.  There was also sparks.  I was pushed away from the bench into the middle of the room, did not loose consciousness but was in shock I presume.  I was moving again, when I was shocked again.  It was at this stage that I realized that it was not my answering machine short circuiting.  I en immediately thought that my device was short circuiting and panicked and ran outside to get a neighbour to help me.  It fired again as I was running down the passage.  My neighbour who is also an ICU nurse, (thankfully) rang for an ambulance for me.  It only took about 3 minutes for me to calm down and realize that it was not a shortcircuit in my device, and then I actually felt ok.  I even wanted to cancel the ambulance as it seemed like a dream and I was fine now.  However, the ambulance did come and took me to the hospital where they kept me overnight for observation and did an interrogation on my device the next day.The cardiologist who actually inserted my device was there for the interrogation and also two other cardiologists.  I live in a rural area of Victoria in Australia, Bendigo so I was a bit of a celebrity in the cardiology circles as they don't have a lot of ICD's firing. The interrogation did confirm that I did have a ventricular fribulation and that the device did save my life. HOW LUCKY AM I.

The main reason my device was inserted was because of low ef and bundle branch block and they threw in the ICD as a "just in case" because of my cardiomyopathy. Thank goodness they did.

I am not able to tolerate beta blockers, (make me very depressed) but I am on Ace Inhibitors and of course the lasix and aldactone. They have added Digoxin so I hope that it will be sufficient. I have heard so much about anti arrithmia drugs that I really don't want to go down that track.

Anyway, I am now very aware of my heart beats, I am really frightened about another shock, I realize I am probably not the only one who feels this way, and hopefully in time it will ease.

Regards, Christine

I was diagnosed with HCM and ventricular tachycardia so I just had the ICD unit put in 3 months ago. I am learning what my work out limitations are and getting use to something in my chest. Reading this forum is helpful.

I am so excited that this message board is here. I was starting to feel a little overwhelmed. I am scheduled in a couple of weeks for my ICD. I have ventricular tachycardia which is not treatable through ablation. I have went through ablation twice and the last time I had so many electrical anomalies that they could not do the procedure. So they tell me they have never seen someone with my particular electrical problem, but that they have read about it. Anyway, my specialist at UCLA has decided after talking with his colleagues throughout the nation that I am a good candidate for the ICD. I am prepared to get the devise. I am mostly worried about getting shocked and it not being warranted. I have some questions about the ICD from a patient perspective.

Does the ICD fill uncomfortable?
Do you ever get shocked just because or is it only when it detects something is wrong?
Do you feel better since you got the ICD?

I think that will start me off. I really appreciate anyone that replies.

Thank you,

Michelle