hello my name is colin and i am 31 and my dads name is skip and he is 74
he has an icd and i want to help him learn more about it and find some friends to help him
we will be posting together as he is not online yet
we live in berkeley ca
and i want to know more about what options there are
i know the unit he has is being recalled and also it needs a new battery in aug
think it was put in in 05
i know he doesnt like it and wants it taken out but the meds he is on to slow down his heart could be to strong to do that
ill post model number later as i dont have it now
he has a left ventricle in his heart that has a bad valve and a few other health conditions
also when he went to the hospital thay gave him some meds that ruined his thyroid so he doesn't trust western medicine and doctors
so we need some advice as to where to go from here and what to do
thank you

Hello Colin and Skip -- I am posting a short note here, so that you will be notified of the response to your post.

I too am local -- 3o minutes away from Berkeley. We have local monthly meeting in the Bay Area -- Look on the main Forum Page and see "BAY AREA ICD USERS GROUP".

You can also contact me (PM) through here or feel free to call me.
925-862-0664.

Hi
my name is julie. Im 39 years old. I have sarcoidosis in my lungs, head, heart & sometimes my eyes. It causes me to have ventricular tachycardia. It started in january 2005 and that is when I got the ICD. I have had to have my medication changed a few times in the past year. i seem to have a very irregular heartbeat as well( something to do with something prolonged with a Q)i didnt know about this and its nice to find a place where there are people that can relate to things. No one that i know really gets it and its not something easy to explain.
thank you for being here
julie

Hi, I'm Jim, age 70 from the Philly area. I'm scheduled to have my ICD implanted on Aug. 5, due to the fact that my EF has dropped to 30%. I've had cardiomyopathy for about ten years and have generally been well-compensated thanks to Toprol XL and other meds. A year ago, after being diagnosed with A-fib, I had a cardioversion and was put on Amiodarone, 200 mg., a day, but have cut back to 100 because it seems to be giving me mild headaches. I'm hoping to get off of it completely, since it may be starting to affect my eyesight. My heart beat remains steady but I guess my ejection fraction is slowly declining. Anyhow, I'm nervous about the ICD -- not with the procedure but with the potential changes in my lifestyle post-op. Look forward to participation in this group as life goes on.

Hi everyone,

I stumbled across this forum while looking for information about using a magnet to disable an ICD and was impressed by the content – so many of the posts could’ve been written by me. Please bear with me as I recount my saga as I tend to be quite verbose.

I am a 54 year-old male semi-retired aerospace engineer and private pilot living in southern California and I suffer from indeterminate tachycardia. I suspect that I have had this condition for quite a few years as I have worn a heart rate monitor for the past decade whenever I went biking. Since my motivation for biking was primarily for the aerobic exercise value, I would normally ride at whatever speed that was required result in a heart rate in the 160-179 bpm range. Depending upon the relative wind and the grade, that target speed could range anywhere between 10 mph and 20 mph. However, every once in a while, I would get up into the 180 bpm range and then have the reading mysteriously plummet to the 90-110 range while still maintaining a steady speed. Slowing down a few mph would usually result in the heart rate reading returning to the 160’s. My theory is that the HRMs are relatively unsophisticated devices with simplistic algorithms that are incapable of handling some aspect of a tachycardia pulse.

Last August, I went in for a routine treadmill test in conjunction with my bi-annual flight physical. I’d been at it for five minutes or so when the technician asked how I was feeling. “Fine.”, I replied. “Any chest pains or shortness of breath?” she asked. “No, I’m OK.” “Do you feel dizzy or light-headed?”, she further inquired – her voice starting to sound a bit excited. “No, I’m starting to feel a bit warm, but that’s probably because there’s no air circulating in here.”

Well, the next thing I know, she’s suggesting that I take a break and lie down on the examining table for a bit. Since I’d never had a treadmill test before, I figured that taking a break mid-way through was standard operating procedure and was surprised that I never seen this mentioned in any description of a treadmill stress test. “How are you feeling?”, she asked once again. “I’m fine… does everything look good so far?” “Well,” she explained, “I want the doctor to take a look at your EKG before we continue.”

It wasn’t very long before the closet-sized room was filled with doctors poring over my chart. I knew I was in trouble when one of them announced, “Cancel all of my appointments for the rest of the day!” They contacted the lead doctor at the clinic and after a brief consultation, he came over and briefed me. “You’ve had a sustained run of ventricular tachycardia during your stress test.” He further explained, “It appears that you have some degree of blockage in one of the arteries leading to the heart.” “Don’t worry,” he continued, “We’re going to check you in at the hospital next door and put in a stent to open up the artery.” “You’ll be fine.” he assured me. Those reassurances fell flat several minutes later however as a lively debate ensued as to whether I was OK to transport the fifty feet or so to the hospital emergency room by wheelchair or if it might be more prudent to utilize the paramedics instead. “I’m fine!”, I insisted, “I can WALK to the emergency room!” We compromised on the wheelchair.

To make a long(er) story short(er), I wound up having two angiograms at two different hospitals (one standard and a second test in which differential pressure readings were taken) – each concluding that I had less than 5% blockage and an ejection fraction of 65%. The conclusion was that my problem was purely electrical in nature and an AICD was recommended as the solution. I asked whether there were “chemical” alternatives such as beta blockers available. The doctor informed me that although drug therapy might be effective, there would be no guarantee and that an ICD was the only fail-proof solution.

Prior to agreeing to have the procedure performed, I checked with my Aviation Medical Examiner, who stated that AICDs fall under the same guidelines as pacemakers and that certain data must be provided following 2-month period post-surgery. He provided a hard-copy of the FAA website that deals with pacemakers, indicating the 2-month waiting period and listing the various data that must be provided. I provided the list of data to my cardiologist’s assistant, who confirmed that they could provide everything listed. I also checked with the hospital resident expert on pacemakers and AICDs, who reported that he has a dozen or so pilot patients with pacemakers and/or defibrillators. With that in mind, I went ahead and proceeded with the implantation. Since then, I have researched this particular topic on the internet and have discovered information that contradicts the advice I received prior to surgery. The official FAA website is fairly silent on the subject of AICDs, stating only to the AMEs that an AME must defer conditions including "Anti-tachycardia devices or implantable defibrillators." This essentially says that it is up to the bureaucrats in Oklahoma City to make the determination. Anecdotal evidence suggests that although ICDs were accepted at one time, it was only with the proviso that shock therapy has never occurred for 3 years prior. From a more recent standpoint, approval has only been granted in those instances for which the shock therapy is disabled, or the entire device has since been removed. Sigh…

Regardless, life goes on and adjustments must be made. Other than not flying, life after implantation remained fairly normal. I continued working part-time with a helicopter-related side business I started while still employed as an aerospace engineer, I was back in the saddle and riding my bike on a fairly regular basis, and all the rest of my spare time was occupied with a laundry list of home remodeling projects, courtesy of my wife.

In December of last year, I decided to take advantage of the soon-to-expire tax credit on new vehicles as well as the depressed prices on recreational vehicles and so purchased an RV from a dealer in Dallas, TX. Barely a week from Christmas, I planned to fly to DFW, pick up the RV, equip it locally, and drive it back to SoCal while camping along the way.

The night before departure, I was packing my suitcase when I was zapped for the first time. Needless to say, it came as a complete surprise as I was simply standing there, reading the instructions on a new cell phone charger when it occurred. There was no warning whatsoever, no symptoms at all – simply a shock out of the blue. I uttered a loud curse… which my daughter claims came out as pure gibberish. I had never been briefed on what to do in the event of a shock, so I simply ignored it. After all, it was a Friday night, the clinic was closed until Monday, and besides… it wasn’t all that bad. Unpleasant? Definitely! But it was over so quickly that, aside from my involuntary verbal outburst, it was entirely tolerable. So off I went to pick up my new RV.

The second event occurred the very next day as I was cruising the aisles of an east Texas Wal-Mart, shopping for RV paraphernalia. Once again, it came totally unexpectedly and was accompanied with a choice expletive. Fortunately, there was only one other shopper nearby and he barely spared me a glance before he continued loading his cart.

The remainder of the three-day trip was uneventful and quite enjoyable. As soon as I returned, I made an appointment with my EPD, but they seemed unconcerned by my experience and scheduled me for the first Monday of the new year. The holidays passed without any further incidents and no lifestyle changes on my part as once again… it wasn’t all that bad. The day of my appointment eventually arrived and after interrogating my ICD, they verified that both shocks were “appropriate” as my heart rate had rapidly escalated to 200+ in a very short period of time. In retrospect, I was subconsciously experiencing a bit of anxiety about the trip and that is what caused my heart rate to increase. Consciously however, I wasn’t concerned in the least. Anyway, the doctor wound up prescribing a low-dosage beta blocker – 25 mg of Metoprolol EP once daily.

The third event occurred in February of this year as I was traipsing around the mountains on vacation in North Vietnam. In this case, I was already at 6,500 feet – huffing and puffing as I hiked up a steep mountainside. I wasn’t too concerned, especially since I couldn’t recall whether or not I’d taken my daily dose of Metoprolol since we’d just arrived on an overnight train and my usual routine was out of whack. I spent an additional 2 weeks travelling throughout north and south Vietnam and Cambodia without further incident. Upon my return to the states, I made an appointment with the clinic and they interrogated my ICD. Once again, it was concluded that the shock was appropriate. As for me, I wasn’t overly concerned as I felt like I knew the cause. I was also reassured somewhat because not only did I manage to not curse this time, I didn’t even break stride when I got zapped (although I did stop and catch my breath afterwards).

The fourth (and hopefully final) event occurred in March of this year. I had planned to drive the RV up to Oxnard (about 70 miles) to have a canvas cover custom fitted and then drive back. Unfortunately, the vehicle battery was dead that morning and so my departure was delayed by nearly two hours. As I drove the freeways of southern California, I was mentally calculating when I could expect to return and concluded that would hit Los Angeles at the peak of the afternoon traffic “rush hour”. If you’re at all familiar with LA freeways, you’ll realize that “rush hour” is a complete misnomer as traffic does anything but “rush” and the “hour” is more likely to last five or six. Apparently, this local knowledge was sufficient to create a fair amount of anxiety – more than 25 mg of Metoprolol could counter.

Unfortunately, I was zapped as I was approaching a freeway interchange. Not only was there no exit for miles, there wasn’t even an opportunity to pull over as SoCal freeways tend to use every last square inch of concrete to create as many lanes as possible. I was forced to drive another 3 miles before I could exit the freeway, getting shocked an additional six times along the way. As soon as I pulled onto a side street and parked the rig, I called 911 and explained my plight. Although I had noted the street signs and given the operator my precise location, he questioned whether or not I was certain after I had given him the address on the house in front of which I was parked. At this point, I could only look into the rear view mirror and confirm the cross-street, but not the actual street on which I was parked. He also said that I should be able to hear the sirens by now, and of course I heard nothing as it was another five minutes before the fire department was on the scene. This didn’t exactly help to relieve my anxiety, and so I continued to receive shocks periodically – a total of five more before the paramedics arrived. A total of 11 shocks over a 15-minute period, as determined by the ICD interrogation printout later provided to me by the emergency room doctor.

An hour or so passed with all sorts of nasty chemicals dripping into my arms before my heart rate was fully stabilized. Another five hours in the ER while they closely monitored me, and then an overnight stay in the hospital before they kicked me loose and let me go home. My EPD has since switched me to 50 mg of Metoprolol tartrate twice daily.

This last episode has been my undoing. It’s been four months since I happened, and I am still apprehensive about driving the freeways. Although I generally handle local freeways relatively well, I can’t even attempt an unfamiliar route without the aid of a heart rate monitor. A couple of months ago, I found myself on the same freeway, approaching the same interchange. As I approached the interchange, my heart rate began to increase rapidly, pounding in my chest as I broke out in a sweat and it remained high until I was well past the interchange. I have no idea how close I might’ve been to yet another round of therapy and this has been very disconcerting to say the least.

And so here I am, nearly a year after receiving my AICD, and my quality of life has been severely diminished. I have two helicopters, neither of which I can fly as pilot-in-command, I have yet to resume my bike riding and consequently have begun to gain weight. I carry a small-yet-powerful neodymium magnet with me every time I leave the house, and I can’t travel more than 20 miles without first strapping on a heart rate monitor. All of this because of a small device that I honestly can’t say has been a lifesaver.

Hi all my name is Dave from Southend on Sea, Essex, United Kingdom. Im a 56 year old retired fire brigade officer. When i was eighteen i got a huge electric shock from a wall socket. From then on always had a very fast irregular heatbeat. In 1980 ran a marathon, all through training i could never take my pulse as it was too fast and irregular. Didnt give it anymore thought till a work medical in 1996 when the nurse said i had a irregular heatbeat. Diagnosed as AF no treatment but advised to take aspirin everyday. 2004 just months before retiring had bad pains in lungs due to being filled with fluid, week in hospital diagnosed with heart failure, all the usual drugs ace inhibitors, beta blockers, water tabs, warfarin, statins, and gout pills (a sde effect of the water tabs apparently.) 2006 had an ICD (medtronic) fitted at Barts hospital London. Had one shock after a month due to threshold being set too low (200) now set at 222 no further shocks since , I download on my phone line every 3 months visit once a year. Im so lucky, I get no symptoms or shortness of breath. Have recently taken myself off statins and the gout pills, statins, because of the side effects (periferal neuropothy) and gout pills because i didnt think i needed them (proved right so far). Two children, recently became a grandad for the first time.

I have started to read through some posts but its gonna take some time. I came across this site researching body fat scales and their use (or not) with an ICD. Does anybody use them?
Dave

Hi my name is Shelly. I am a 37 year old mother of 4 and am very happy to be saying that considering the events of August 2nd 2009.
I went into work on a normal stressful day with my in-laws when about noon I hit the ground. My 2 oldest children were with me and my daughter who was trained in CPR was sent away from me to get my husband out of the field. My co-worker put me in the recovery position and went on working. My husband got to me a few minutes later. My father in law was on the phone with 911 by this time. I was turning blue already. My husband started CPR and kept my heart beating until the ambulance and fire department came. It took 2 shocks to get a sinus rhythm. I was still was not conscious. They rushed me to the local hospital and then on to University Hospital in London Ontario. They put me into a hypothermic coma for 24 hours and then let me warm on my own. With my husband by me everyday, he took care of making all the important decisions for me. I was unconscious for 10 days. In that time, they had to intubate me 3 times in all.
On the 12th of August I came to. To everyone’s surprise I did have my memory intact for the most part. I can’t remember all the events of the day it happened, but I do remember most everything else. In being intubated 3 times, they paralyzed my vocal cords, so I could barely make a sound and had to eat through a tube put in my stomach. A few days after I became conscious, the doctors came to talk to me and tell me I was going to receive an ICD. I was both scared and happy at the same time. My doctor had discussed the possibility with me, but decided I was too young to have one.
I have Dilated Cardiomyopathy and a left bundle branch block. They have no explanation how I could have gotten this, but to say it is idiopathic.
I was released from the hospital on the 22nd of August 2009. I went for my first checkup with the cardiologist and they found a blood clot on the lead of my ICD. They immediately started me on blood thinners, so as to prevent a pulmonary embolism. Also I went for a checkup to see how my vocal cords were coming along and they found a growth from the damage they caused in the intubations. I was put on ulcer medicine in order to dissolve it.
Since then, the clot is gone, the growth is gone and I am feeling much better. My EF has gone from 30 to 45 %. I am extremely happy at the direction it is going. I am still on blood thinners for a while and am on beta blockers and ace inhibitors.
Every day I wake up, so thankful to still be on this earth, with the family I love so dearly. I can only imagine the torment they were put through. Not knowing if I was going to make it and if I did, would I even have a memory of them.
Every time I see my cardiologist, he tells me I am a miracle. I believe him.

Hi. My name is Sue, and I am the mother of five incredible children, ages 4 to 16. Our 7 year-old daughter, Jackie, miraculously survived a sudden cardiac arrest five years ago at the age of 2. That was her first symptom! She was subsequently diagnosed with Long QT Syndrome. She is currently taking a medication which seems to be keeping her QT interval in the "safe zone", we have an AED for her, and she sleeps with my husband and me. However, as she gets older, we are facing having an ICD implanted. We are looking for support and information as we approach this next stage in our lives.

Hi guys my name is Tara Frank. I'm 30 years old and live in Farmington Minnesota. I've had my ICD for a week now... It still hurts a lot! The reason I have an ICD is because I have Hypertrophic Cardiomyapathy. This is a new diagnosis after my brother Chad died very unexpectedly on Feb 27 of this year of the same thing. I really feel lost... I was with my brother when he died (we were in the car driving to a concert) and having to deal with all of it it really hard.

I wanted to join this site because I wanted to know other people that have to deal with some of the same things I'm dealing with.

Greetings!

My name is Deidre and I'm 44 years old from West Bloomfield, MI. I was diagnosed with cardiomyopathy in January 2010. I received my ICD on May 27th. Although I no longer have restrictions, I'm still a bit sore. I have been doing cardiac rehab for the past four weeks and complete it on Tuesday, July 27th. I have a very active 11 month old named Alex.

Hi: My name is Carole(53) and I live in Ontario, Canada.I have three grandaughters and three grandsons, which keep me busy in sports In 2004 I was diagnosed with Dilated Cardiomypathy and in all those years my e/f really never changed, so May of this year I had a ICD put in. I feel the same, but aleast in my mind I know I have a back up now, that will probably save my life.
My husband and I love to travel,plus we have permanent campsite that we go just about everyweekend in the summer.
Looking to make new friends on here and I wish you all the luck and health

Carole

Hello Everyone,

I am Blake, I'm 29 years old I have a 2 year old daughter and a beautiful wife which I love with all my heart. I do not have an ICD yet, but will be going in for my "upgrade" in the morning. I am a police officer in the wonderful state of Texas. In the academy I had the joy(sarcasm) of experienceing a Taser first-hand and since then I am a little nervous about anything that is designed to deliver electricity to the body. I was diagnosed with HCM when I was 19 and have not had any issues since then. I recently went to get a check up with my cardiologist at which time he decided that it would be a good idea that I get one. I am a little nervous about being able to return back to work. Are there any law enforcement officers out there that have returned to full active duty?

I all,my name is my user name.

I live in Wasilla,Alaska

I'm 46 years old

My second heart attack was June 1st of this year,on June 4th I had my bypass(6 of them,they sad my problems are hereditary as i am and have been very conscious of my heath for the past 20 years due to my first one),July 13th I went back in with pneumonia,on Aug 2nd I had my ICD installed.

Below is a picture of me and my daughter,she is 18 and I have a 25 year old son on his 4th tour.

Hello all,
My name is Jan, twentythree years old from the Netherlands. I had a cardiac arrest while playing sports about one and a half year ago. Took some time, but I survived and left the hospital a few weeks later with an ICD. First shocks about one year after implantation. Horrible experience. It shocked me nearly twenty times in 15-20 minutes, without being unconscious. An emergency team got me out of it. I hope to find someone who experienced the same.
Jan

Hi everyone. I'm a 72 year old happily married grandpaw who had a MI on May 20, 2010 while walking my dog. My MI was the type which is called the "Widow Maker", but since God was with me (as always) I survived to tell about it. I had a 100% blockage (doc said clot) in my LAD (Left Anterior Descending) artery. When the clot was removed some 3+ hours later that afternoon I had suffered 50% damage to my heart. My EF was 30% the day of the MI and was 35% last month. I go in for another echo this coming Monday to see what it is now. Later this month/early next month (September), it will be determined if I am a candidate for a defibrillator implant. I'm currently wearing a "Life Vest" which is a portable/external defibrillator (a temporary ICD) that I only take off to take my showers. I came to this forum to read all about defibrillator and/or pacemaker implants and to hear the up and down sides of having one implanted. I'm definitely learning first-hand from you folks about ICD's. I had a great telephone conversation with John C. from North Carolina earlier this month. John had posted his email here about 5 years ago and I sent him an email hoping to hear from him (he responded......can you believe it). I intend to keep in touch with John and others via telephone and/or this forum. I want to thank you all for providing so much good information about ICD's for us new-comers. I'm about half way through a cardiac rehab program at a local hospital. It consists mostly of education (learning how to eat right) and exercise three days a week. I had two stents installed and several angioplasty's the day of my MI. Everyday I take Coumadin, Multaq, Zocor, Lovaza, Linsinipril, Coreg, Zantac, Baby aspirin, and Plavix daily. I've had PVC's since 1983 and AF since 2001. I believe my clot was started on it's way after I had a heart catherization following a 'so called' failed stress test. No more than 40% blockage was found and when I inquired, the doc said my stress test was a "false positive"! The lead from a heart cath is like a pipe cleaner.......can you imagine it going thru a pipe of encrusted rust (plaque in artery) without disturbing or knocking loose anything?

Tom