Hey Guys

I'm Graham Aged 24 From Belfast Northern Ireland. I Have ARVC Which Was Found 3 Years Ago Now and Have Had My Medtronic ICD For Those 3 Years Now Also!! Was Zap Free Until 2 Weeks Ago When I Received My First Shock From My Device On Holiday In Spain But I'll Post About That Seperate As I Need People Advice On Dealing With Your First Shock. I Live With My Sister and Have a Beautiful Girlfriend Of 2 Years Who I Adore and Is Pictured With Me Below, Have Close Group Of Family and Friends Who I love a Silly Amount This Is Just a Quick Intro and Hopefully I'll Get To Know You All Alot Better and Be Able To Help and Receive Advice On Questions and Queries We Have. I'm So Glad I Have Found a Place I Can Speak With Other People Who Have ICD's and Know Exactly What Its Like As I Know Our Friends and Families Try Their Best To Understand But Theres Also Nothing Like Speaking To Someone Who Knows Exactly The Way You Feel To Help and Reassure You So For This I Am Extremely Thankful!!!!

Take Care Everyone and I Hope We Speak Soon

Hello...I am really glad to have found this site, as I am so distracted with worrying about my upcoming ICD surgery...mostly, I am hoping I will have more energy. Will I? I am 57, pretty active although lately less so...I am so freaked, I don't even want to tell my kids about it...

Hey peeps,
cut a long story short, diagnosed with ARVD at the age of 23, sometime in April this year and had my st jude implanted sometim in july.... ive had 11 appropriate shock since then, 3 in one day and rest 8 on another day.... i can honestly say for those of you who havent had shocks yet thn your the lucky ones cuz its not somethin you should be looking forward to.

I am 4 days new with my ICD, unfortunately my brother gave his life for me. He passed in January 22, 2008 of Sudden Cardiac Arrest he was 40 years and no signs. He had taken and antibiotic that day and had a very important audit the next day. He was married with 3 children 9, 6 and 4 I have created a site in his memory http://givelivelove.org

For me I am 39 years married with 3 kids 4, 2 and 6 months. After his passing I began to get checked out and just had an EP Study on Thursday after which I got my Boston Scientific ICD.

For pictures of my family you can visit http://crazyphotoguy.com a name my late brother gave.

I live in Phoenix AZ and have 1 brother in Montana and a sister in Boston.

I have a few questions I will ask in a separate post.

Regards,

Matthew

Hello all. My name is Ann and I am 58 years old. I had a St. Jude ICD implanted on October 1st. In May I had a bout of diabetic ketoacidosis and was hospitalized for a week. They did and ekg and echo and all came back okay. When Ileft hospital they suggested I go to a cardio and have a stress test. Four days later went to cardio and set up for stress test following week. As I was leaving doc asked me to come back in for an ekg. Nurse did test and said to stay put she had to show this to doc. I knew it ment trouble. He sent me right over to ER as I was having a heart attack. They did a cath and found nothing but had heart damage. Did all kinds of tests. EF was 29% so decided to implant.
I feel resonably well. The insicion is healing slowly because of the diabetes.
I was an office manager for a plumbing contractor but lost my job during this time because of economic slow down. I will have to look for another job as soon a docotr okays it.
I will post soon as I know I will have questions. I have been reading posts and have had many questions answered.
Have a great day
Ann

My name is Catherine. My boyfriend is the one with the ICD. Although I knew that he had serious heart problems in the months leading up to when we officially started dating, he had to break the news to me 2 1/2 weeks in to our relationship that he had to have surgery to put the ICD a week from that day. His parents traveled out to meet us, and we spent most of the next week in the hospital with him. Although the original surgery went well, the day after he was released we had to rush him back to the emergency room because one of the leads had come loose. God was very gracious to us, and three days later we were able to take him home from the hospital again.

If any of you know of places I can find out more about the after effects of ICD surgery, or can share advice or experience, I would greatly appreciate it. Although he's had the ICD for a little over two months now, he has had several episodes over the last three weeks (including almost passing out about 3 times that I know of), and he is growing weaker by the day. Thanks!

To paraphrase from the movie "The Departed." The Irish are said to be impervious to therapy but here goes...

Pacemaker/ICD support group message board

Hello, I’m a 33 year old male living in Burlington, Vermont. In late 2003 I had an unexplained (to this very day still an unknown) cardiac episode listed as Sudden Cardiac Death. I’m still not quite sure what that entails/means. anyway, the incident was nuts, my friends, family, and GF of 11 years were all prepared for my goodbye, at best I was thought to be very vegetable like if I recovered. I was eight minutes no pulse, no breathing, after collapsing in a yoga class of all places. They eventually shocked me four plus times and got me back. In the hospital thereafter it didn't look good for me; my girlfriend urged them to put in a pacemaker/icd, so that in the event that I did recover I would have a little help so to speak, and a chance to survive if it ever happened again while no one was around.

Speeding ahead, I’m Irish and too stubborn to die, I woke up Christmas Eve and began my come back.

To this day doctors are miffed, all tests lead to no answers why the event occurred.

In 2003 when the event occurred I weighed 151lbs, and was a pack a day smoker at age 28. I’m now 33 and weigh roughly 192lbs w/ still a 32 inch waist. I’ve become a weight lifting health nut, studying nutrition and packing on lean muscle mass. I lift intense and very heavy 4 days a week.

My device has never gone off or been utilized other than its recent miss-firing; I hate the damn thing as of this week!!!

It miss-fired and went off during my MMA and Brazilian Jiu-jitsu class, shocking the ever loving shit out of me four times.

If the devil had a mechanical bull which shot electrical bolts out of its devil bull horns, and this bull ran full tilt down a steep hill and gored you in the chest, then you'd know how this shit felt!!! I’m sorry that some of you can identify with this.

In addition to the physical trauma the psychological effects of the misfiring remain heavy, fear of your own death and mortality washing over you in a vivid flashback as its occurring; every time I try to sleep I imagine it shocking me! I didn't black out or fall, after each shock I kept walking it off, cursing, and trying to regulate my breathing. I knew my heart was good and the devise was malfunctioning.

The EMT’s arrived at my class; to the ER I went, by morning I was on a treadmill, taking a stress test, because I was certain it was a machine mistake and not my heart. They turned off that evil shocker thing in my chest whilst I ran on the treadmill, after I got my heart up to 200 +bpm they confirmed that even at 160-180 bpm it would have sent out a "Therapy" that's Fu*king rich huh, a therapy, e.g. it would have shocked me, it was double counting my T-wave!!!

Even w/ the high intensity cardio 200bpm my heart was running fine and appropriately on its own, but if the devise were on it would have double counted and shocked me, as it did at class the previous night. Additionally, in general my devise was set up too aggressively for someone w/ my fitness demands.

They’ve adjusted my settings, I have a good lead wire, but I’m spooked about getting shocked again!!! This double counting shit is CRAZY, misreading whereby 180 bpm is interpreted as 360 bpm!!!

This was all less than 48 hrs ago. I bought a Nike heart rate watch today and am going to where it while doing any cardio conditioning to monitor my heart rate, my cardiac team bumped up my settings to 250 bpm before warning and 30/40 bad = first warning 18/24 = second which is a shock.

They’ve said it won't happen again but I’m not so sure. Either way I’m back at the gym for a heavy chest and bicep split training tomorrow. It’s funny, weight training despite high intensity doesn’t scare me, it’s the high end cardio that freaks me out right now.

This is a positive and a negative message to the support group because I’m proof you can do things athletic and physical w/ an icd, condition dependent, as I said I’ve gained 40+ lbs of mass from lifting from 2006 until now (didn't lift in 2004 and 2005) and I’ve trained Muay Thai, MMA, and Jiu-Jitsu since all w/ a chest protector.

I’m scared to run or train post shocking however!!! If it shocks me again inappropriately I may cut it out myself and sell it on the black market and sue metronics (sarcasm and anger w/ a peppering of truth).

They’ve adjusted the settings the best they can, it’s the placement of the lead which might be affecting the t wave doubling. I don’t want to be cut open yet because of my training; I’ve worked too hard for this and don’t want to spend six months on the mend w/out training. Sitting on my butt would destroy me; I’m not a sit at home and watch television type of person.

I’m rambling... S.O.S and feedback from others would help a ton. Bless all young and old on this message board.

Sincerely,

Aaron

My name is Jenn, I am 34yrs old single mom. Nick is my 4 1/2 yr old son and the light of life. My ex husband is very active in his life and we are friendly. I have a wonderful boyfriend that has been with me through every step. I live at my parents for now, they are two of the most amazing people. I live on a small farm with 2 horses, dog and a cat. When I was able to work I am either a surgical vet tech or a horse trainer. That's my personal stuff.
As far as my medical stuff- Last June (07) I collapsed at work (at the time animal hospital). To keep it short-I was rushed to the ER, I ended up spending 3 weeks in the hospital. I was sent home with a cardiac sarcoid, an ICD and a fantastic team of new doctors. I never thought at my age I would have a cardio and EP doc. The entire time I was in the hospital I heard constantly what a rare and unusual case I am. I actually had one doc say I was a "House" episode, for those familiar with the show that's not a good thing! I had doctors coming in to meet me, just to meet me b/c I was such an unusual case. They are figuring that the sarcoid was cause by some sort of virus b/c I also have nerve damage/pain that runs through my chest, along my side and into my upper back. So I also have a team of doctors at the Pain Management Center to try and get that under control (so far year and half later no luck).
So that's me in a nut shell.

Hey Guys my name is Bob and I've had my ICD since March...haven't had a shock yet. I'm really glad I found this board because I have some concerns and questions that are difficult to talk about with friends and family. I'll try to sum up my story in a few sentences. I am an extremely healthy fit guy, I'm 27 years old. I was a state football player of the year, state champ in track, and avid weightlifter/runner. The worst thing thats ever happened to me is a cold...and I usually only get sick about once every 3 or 4 years. Anyways I was just standing there at work one day and passed out. They took me to the hospital as a precaution and they saw something funny on my EKG. It must have been something very faint b/c the doctor told me he discussed my case at one of there weekly round table discussions. He said they passed around my EKG and asked how many of you would have kept this person overnight for more observation and tests. Out of about 20 only 7-8 would have kept me.

I had every test they had and passed them all with flying colors exept for the EP test. When I got up to the point of only getting one extra beat I went into a bad rhythm. So based on that test they gave me the option of not getting a ICD and just monitoring my health or putting one in. I opted to stick the thing in. The only problem is I've never really got an answer as to whats wrong with me other than an electrical problem in my heart.

I hope this board can help me with some of my fears and anxiety. I'm really scared to be shocked...I'm fine throughout the day for the most part. But at night I seem to lie in bed listening to my heartbeat and worrying. I also am terrified to exercise and workout anymore...I'm hoping to get a little motivation from some of you veterans. To be honest I'm a little depressed and feel down a lot of the time. Thanks for all of your help in the future

Hi folks,

I was diagnosed with ARVD and had a Medtronic ICD implanted in 2003. A year later it was recalled and I received a new one; I'm 52 now. I was shocked for the first time a year ago. Three shocks on one occasion. After the first shock I was thinking, well that wasn't so bad, but then the second shock came and made me yelp. Still in VT, I went to the ER where the third shock felt like it lifted me right off the gurney. Still in VT, I was loaded up with amiodarone, and either that, or my sister's arrival and hug finally got me back to a normal rhythm.

I was completely thrown for a loop by that experience and it took two months of ativan and 6 months with a therapist to calm me down. Not much was said about the fact that the ICD didn't manage to get me out of VT. I wonder if anyone else has had that experience?

At the moment I seem to be in a period of instability and am trying to sort it out with meds. I hope that I don't get shocked, and that if I do, I'm not as traumatized by it the second time around. I can't help but think about future generations looking back on the days when patients had to walk around with ICDs in their chests, wondering if they were going to get whalloped (sp?) at any moment. They will just shudder, don't you think? Like we do when we see pioneer dentistry tools.

I'm in Santa Cruz, California, so I'll be getting in touch with the Bay Area ICD support group soon I hope.

Thanks for listening. I'm glad to have found this group.

Martha

My name is Erzsi and I have been diagnosed with HCM (genetic) plus other heart issues. I am a very active 46 year old female and am scheduled to receive my implant in January. My 22 year old niece suffered a sudden cardiac arrest one year ago which led to a round of genetic testing for our entire family ending with my current situation. I recently began taking a beta blocker which has allowed me to continue my active ways. I have been reading the posts here for a couple of weeks and have gleaned an enormous amount of information from the experienced and knowledgable posters. I have many questions to ask and hopefully some small wisdom to share as I undertake this journey.

Thanks to all!!

Hi, all,

My name is Wynel and I am a 39 year old mother of three. I received my ICD on March 31, 2006 after being diagnosed with AV Nodal Reentrant Tachycardia and ARVD. I have never received a shock although I find myself wishing I would get one good one so that I would know that all of the stuff that's come along with the diagnosis and the device has been worth it. I have never really dealt with the diagnosis which has made accepting life with the ICD all the more difficult. My cardiologists' office hosts ICD support group meetings twice a year, but I have yet to see anyone anywhere near my age there. I am so happy to have found this site where there are people in my age group that may be faced with similar challenges.

Hello Everyone,

My name is Nobby and I am 45 years old and live in San Diego, California. I have been reading this site for quite awhile but all of you seem very nice so I wanted to introduce myself and start posting.

I had my first ICD put in back in March of 1990. Back then the machines were HUGE and had to be placed in the belly. The surgery back then was really bad. They opened up from the middle of my chest to the side and also about 5 inches in my belly. They used to wrap a mesh around the heart and attach the leads to the outside of your heart. Scary stuff and I am just glad for the technology that I am still here 18 years later.

In March 1990 one night after OD'ing on Mint Chocolate Girlscout cookies my heart went crazy. Yes, I love those cookies and when they would come in once a year I'd usually eat an entire box... Well, I guess the sugar and chocolate just made my heart race. I went into the ER and 4 weeks later I was at home with my new AICD. It turns out I had WPW with VT. The WPW I have is in a place that is not possible to operate on it but what is puzzling is the VT I get. When they did the stress test on me I went into fibrillation and all I remember is feeling really strange and the next thing I knew I was laying there with my chest on fire. They had to use an external defibrillator twice to bring me back. That was when I decided to get the AICD put in after getting a few opinions. Since that time my machine has not gone off but my heart has gone into VT many times. I learned that when I start if I push a very heavy cough it corrects my heart before the machine goes off. I'd say about once a year my heart takes off like this so I am greatful for this machine and the knowledge of what to do. Even with how long I have had this it still scares me when my heart takes off even though my doctor says I do have the ultimate protection. I do take 25mg of Atenolol twice daily and it seems to keep it in check. I was as high as 100mg twice daily but that really made me feel terrible so we slowly cut it down. I was at low as 25mg once a day but my heart went into VT a few times so we went back to twice daily and I have been fine.

Now I am fighting new problems where this year I lost my vision in one eye. I mention this because it may be MS but we can't verify it because I can't do the MRI because of my ICD. The new ICD's can do a pretty good job with MRI's and John Hopkins did a study on doing those and anyone with with ICD's put in after 1996 may eventually be able to do MRI's if needed. Unfortunately for those of us that had it put in prior to 1996 an MRI is very risky. For us when the ICD was moved to the chest the old leads and mesh were left inside. Those leads and mesh can absorb the heat from a MRI and burn the heart so for now we are out of luck.

Anyway, I look forward to chatting with everyone and thankfully the technology is to the point where we all have this extra time to enjoy our lives.

Nobby

Hi everyone,

My name is Heather, and I live in Toronto, Canada.

I have a dialted left ventricle, and had an ICD (Medtronic Virtuoso DR) implanted in March 2008. I am now taking ACE inhibitors and BETA blockers.

Everything has been fine, and I've been adjusting to my new life.

I look forward to speaking with you all, and learning from everyone's experiences.

Warm regards (even though it's freezing here, and it snowed 3 inches),

-Heather