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Posts from Jan. 1, 2018 to the present. Plus important announcements. (ICD warning sounds)

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Post by patd » April 23rd, 2011, 8:37 am

Hi I'm a new member. I am a weaver and live and work out of my studio in Santa Fe, NM. I received my ICD implant in early March. I'm 62 years old and still trying to deal with the outcome of my heart attack and bypass of 2008



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Post by Aoife » May 2nd, 2011, 10:39 am

Hi, i am a 35 year old from Ireland who was diagnosed with cardiomyopathy in 1999. In 2002 I was fitted with my "lifesaver", a medtronic ICD becuse of my continous VT's. I have had a great 9 years since then, I moved to Spain (where I am currenty living) and lived a normal life. I had a shock once and had the battery changed here in Spain 5 years ago.
This year I have had a couple of complications - one morning I woke up to a beeping sound from inside of me, my cardiologist confirmed that the main lead had become disfunctional so I needed to get it replaced. The timing was unfortunate as I had just discovered I was pregnant.
Unfortunately as the lead was 9 years in my body they were unsuccessful in their attempts to remove it without causing greater damage so they decided to remove the entire ICD and replant it on my right hand side. That was 6 wks ago.
All seemed well up until 3 wks ago when I discovered I have an infection in the surrounding area of the new ICD site.
That was to give a brief background, I ma currently off work fighting the infection and awaiting the next steps, I am glad to have teh forum and hope to speak to some of you with similiar experieneces,

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Post by Eric » May 3rd, 2011, 3:27 pm


My name is Eric Sadler, new to this board, but was hoping you all could relate and help me get through my recent experience. I am 43 years old and had my St Jude ICD implanted in June 2008. In June 2009 it started to buzz to let me know the battery went dead. I had it replaced in '09 and then on month ago I had a lead fracture. Last month I had both leads replaced. Last year I had one instance where I was shocked inappropriately due to the device not being set up well enough. They supposedly fixed it, but last Tuesday, April 26th I went through a 53 shock storm that has really shaken me up. I am glad I found this board and am hoping to hear from you all.
I believe my device is not a primary prevention, I have CHF with a EF of around 28-30%.
Currently my device is off and they are not sure what they are going to do with me. Kind of scary since my father died when I was eleven due to having CHF and having a sudden arythmiaa and back then, they did not have implantable ICD. Thanks for listening.

Eric [bot]

Idiopathic CHF/ EF currently @ 53%, Low point 26%
St Jude ICD implanted 6/2008 Device changed 6/2009
1 Shock (innappropriate), ICD reprogramed 6/2010
Lead revision 3/2011 due to fractured lead
53 shock storm 4/21/2011 (Inappropriate)
ICD turned off May 20111 through 8/16/2011
Lead revision 8/16/2011
VT episodes starting in August 2012
ICD Changeout 2/25/2013 St. Jude Inspire Assura
Too many meds to count
Life is too short, live in the moment and make the best of it :)
Intro is here:http://www.icdsupportgroup.org/board/vi ... 271#p75271


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Post by DavidJ » May 5th, 2011, 11:19 pm

Hello from Australia and especially from the lovely but rather remote small town of Eden situated on the Far South Coast of New South Wales (Pop about 3,400) check us out on Google Earth.

My cardiac problems first showed up as a period of fibrillations in late 1973 aged 37 when I had three years left to complete for my pensionable time in a career that lasted from the age of 15 to 40 mostly spent in the Royal Navy’s Clearance Diving Branch. I then had further careers firstly as a Diving Life Support Technician in the North Sea Oil Fields and then I left to go “dry land” and qualified as a Plumber, which still allowed me to play with water! Finally I emigrated from the UK to Oz in May 1991.
I didn’t have any further cardiac problems until early in 2006 when fibrillations reappeared. Apart from numerous investigative ECG’s and Echocardiograms I also underwent Angiograms in 2006 and 2009. The first Angiogram showed an enlarged heart and one that had received damage to the old ticker caused by silent or unknown heart attacks. The 2009 angiogram showed that there were two arteries requiring bypasses and both the Mitral and Aortic heart valves were regurgitating and required replacements. An operation to correct these problems was completed at Canberra’s Garran Hospital in September 2009. Following my recovery from this operation my breathing and stamina were back to normal and I felt good but was still beset with intermittent periods of fibrillations that were being treated with a variety of medications.

The fibrillations / arrhythmias got steadily worse and two short periods were spent under observation in our small but great local hospital’s emergency department at the nearby town of Pambula. Each time I recovered after a few hours without further treatment. After a more serious attack I was ambulanced to Pambula in February of this year 2011 to wait for a bed space at Canberra Hospital and I was then moved there by ambulance 4 days later, a 282kms /175miles journey.
I was no sooner deposited at Canberra and having just been wired up to a heart monitor when it yelled out for the ward’s emergency team who came rushing to my aid. I informed the team that in fact I felt quite well and had been that way ever since my recent arrival at Pambula Hospital. However staff continued with their initial attempts to slow the fibrillations with an intravenous infusion via an extra large cannula but this obviously wasn’t working fast enough for their liking. Next and with the arrival of the cardiac department duty doctor who had been called in, I was told that I needed to be put into a short deep sleep with an injection and that a shock via pads would then be administered to the heart. And thus it was so.

The next day a Canberra Cardiologist informed me that I needed an ICD to control the fibrillations and if I agreed then the operation would be scheduled for the next day 11th Feb 2011… Having little knowledge of ICD’s I accepted that the medical experts know best and I duly received a Boston Scientific Teligen E102 and a 0185 lead.

The day after the implant found me on my way back to Eden via a coach journey that started at 0400PM and arrived in Eden at 0910PM. During one part of this journey, which goes down a steep mountain, I was suddenly very sick, possibly from the new medications that I had been placed on. Cephalexin as a short-term antibiotic for the ICD wound and a new tablet called Amiodarone had been added to my usual medications of Bicor, Ramipril, Lipitor, Lasix and Warfarin.

I had been told not to drive for the period up to the review so after a period of 8 weeks
(7th April) I had to return by coach to Canberra Hospital for the review and a reading from the ICD.
Feeling extremely well and far better than I had felt for a long time, with no fibrillations or breathing problems, a far better appetite and a good sleep pattern I didn’t expect any problems. However to my consternation and deep surprise, I was informed that I had received a full shock from the implant at around 0700AM on the morning of the day after I had returned home i.e. 13 Feb. I have absolutely no knowledge of receiving this shock, although I had read that a pain on the scale of 6 out of 10 might have been expected. If so then I would have thought that this would have quickly brought me to a wide-awake state? When I asked about this I was told “not necessarily so”

When I asked about returning to driving I was told... Not before another six months.
The driving ban imposed has really given a really severe knock to my almost 75 years “young” feeling of independence. In fact I feel very angry about the curtailment as I think that I would be a safer driver with the implant whereas before the implant I was able to drive with the possible onset of fibrillations and the added chance of an uncontrollable heart attack.

A pamphlet that I had been loaned for a short period while in Canberra hospital about ICD’s suggested that I should join a support group. When I asked about support groups from the lass who did my ICD readout at the Canberra Hospital I was told that they used to have a support group but it folded. Well if they can’t run one in the Capital City of Australia with its large population then I haven’t too much chance of finding one existing in the areas surrounding Eden. Anyway after much investigation of ICD’s on various websites I fell over this support group and hence my request to be let in. I have much to yet learn and a few questions, such as is it usual for shocks to get received during sleep without the recipient knowing anything about it?

Finally I would like to say that overall I give thanks for the implant as I continue to feel better and with far more “Go” than I have had for several years and “maybe” this is because this ICD is doing its job of controlling the fibrillations / arrhythmias, although I am still unaware of any actions that it may be taking on my behalf. Or perhaps it is the added Amiodarone doing its job?
The downside is that I now have no excuse for not mowing the lawns…Pity the mower’s not a ride on or I could plead, “Not currently allowed to drive!”


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Joined: April 26th, 2011, 8:05 am

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Post by ERN23 » May 15th, 2011, 2:48 pm


My name is Erin, I'm 32, was diagnosed with ARVC at 18 by my first cardiologist
in Nova Scotia after a fairly severe episode of Vfib while playing very
competitve hockey. My father had been very recently diagnosed with ARVC as well.
I was forced to give up my hockey career, but remained relatively symptom free
for a number of years.

I moved to Ontario later that year, and a few years later, when I was about 21,
I had another episode of Vfib and walked (yep, walked) into the hospital at
312bpm. The ER got me down to a sinus rhythm with adenosine, kept me in for a
few days and let me go without any further incident. About 3 years after that, I
collapsed in my kitchen but fortunately my wife was home to call 911. I regained
sinus on my own, but because I siezed they ran me through a battery of
electrical tests - completely focusing on my head, not my heart (at this point I
didn't have a GP let alone a cardiologist). Everything in that regard was all
clear. Now, at the request of my cardiologist in NS, I am seen in London,
Ontario, and have been through the same tests again and again. I'm in a few
studies, one for former athletes that seems to be very interesting.

I've had the genetic testing done on myself (confirmed) and my father
(confirmed) - still waiting on my sister to do it. I haven't got the guts to
test my 2 year old daughter yet, after long and intense discussions with my wife
we're going to hold off on getting her tested. They implanted an ICD in November
of last year. So far, it has monitored several bouts of Vfib, but has not
intervened. My blood pressure is taking a beating now, and I have some trouble
keeping my wind, but other than that it's all as good as can be expected :)

Cheers all

Medtronic protecta XT CRT-D implanted November 2010
Bisprolol 5mg
SCA 2007
VT episodes x9



Post by AJ928 » May 15th, 2011, 3:25 pm

Hi Everyone,

My name is Aj and Im a 48 yr old female cardiovascular research scientist from Boston, MA. I also teach at a medical/nursing college outside of Boston. My research interests are younger adults with ICDs as there is little research on this group. I had worked with Jon Duffey from ZapLife (thats how I found this site) a few years back and interviewed some clients from ZapLife and then I published the article "The experiences of younger adults living with an ICD". I am in the process of designing another study related to genetic counseling and issues that couples with electrophysiological abnormalities must deal with prior to childbearing so that myself and other researchers can understand this phenomena better and eventually develop interventions to help. For now I am just listening and hoping to learn more from you all.



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Post by tvmangum » May 15th, 2011, 4:20 pm

Hello everyone, I'm Tim from Greensboro NC. In May 2007 I was diagnosed with bicuspid aortic valve, left bundle branch block and aortic insufficiency. All of these conditions were congenital but missed for 37 years. The cardiologist at home and my cardiologist at Duke University said it would be 10-15 years before I would need surgery for my valve. I had my valve replacement surgery on May 21, 2010, at Duke with a St Jude mechanical valve being implanted. It was expected that my heart would improve both in function and size but instead of getting better it got much worse with my EF going down to 25%.

My Duke cardiologist in March, 2011, sent me to see an EP at Duke and they both agreed that I needed a Bi-v/ICD implant. That took place on May 12, 2011, so I now have the Boston Scientific COGNIS device.


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Post by GenniferT » May 16th, 2011, 9:21 am

Hi, my name is Gennifer from Indiana. My friend and neighbor recently had an ICD implanted because of his heart problems. I've joined to learn more about ICD implants and how it effects one's life. She has always been an active person and I'm curious to know if she can continue to live a fairly active life.


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Post by mjrob » May 16th, 2011, 9:45 pm

My name is James, but I’ve always been called Jamie after an uncle. Friday morning, after returning home from a bicycle ride my chest tightened and my arm hurt, so I woke my wife up and we went to the ER. I believed I would be able to come back home with a medication to control things, but that wasn’t in the cards. I ended up spending 4 days in the hospital and having a Boston Scientific Teligen ICD implanted! The doctor said that after tests, the next such episode could be fatal as I apparently have heart damage. I have always been “healthy as an ox” and have never taken any prescriptions. Turned 55 on May 3rd and by the 9th I had an ICD! Still trying to make sense of the whole thing. I have an appointment with the cardiologist tomorrow AM and have LOTS of questions for him including questions about one medication that makes me feel like I’m in a fog. This looks to be a challenge for both me and my wife. I appreciate finding this group and have already learned much. Not sure what’s next for us, but it sure wasn’t the weekend I was planning!



Post by Jayson72 » May 17th, 2011, 2:22 am

Hello everyone,

My name is Jason I have Dilated cardiomyopathy, HCM, CHF, etc.. I was first diagnosed when I was 17 and was put on medication, but did not become symptomatic until I was 20 when I got my first dual lead medtronic ICD. I received my first shock not long after. At first about every three months then at least once a month until I had a series of shocks that led to endless E.R. visits and landed me on a transplant list by the time I was 22. Barely able to function when I was 23 after having another ICD implanted ( because of all the use ) I was getting was passing out from SVT and getting shocked two or so times per week and sometimes every day I lost count at 35 but print outs from the device later told me i had passed 50. It wasn't long before I was admitted to ICU and the night before an extensive ablation surgery I got shocked twice while sleeping and a 6 shock storm while attempting to go to the bathroom right before surgery. It was then I was told I can very close to death twice during the surgery prep. 10 hours later I came to and with the help of medications and a few more shorter ablation surgeries I was able to get off the transplant list and get into cardiac rehab. About a year and a half later I had my third ICD implanted ( apparently I use it a lot ) in 2005. Then I got married recovered a great deal of heart function, and for the past six years have only been shocked four times randomly here and there, twice when i had the flu and other times just because I guess. I am scheduled for another ICD generator change in October and have noticed a recent increase in chest pain and CHF problems SOB and such, My current EF is 20 and 22 %. but in a nutshell thats my story. I hope to share stories or encouragement with some of you as we all battle this interesting bitter sweet device.

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Post by bethany » May 24th, 2011, 12:34 pm

Hi all I am new here just received an ICD on 5/16/2011. Had quadruple bypass surgery on 3/7/2011. It has been a tough year

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Joined: May 24th, 2011, 10:20 am
Location: Michigan

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Post by dassingerv » May 25th, 2011, 9:40 am

Hi my name is Tori, I work for a cardiologist in Michigan. We are trying to start an office ICD support group for our patients. I was hoping that people on here would help me by letting me know their concerns and questions, so we can address them at our meeting. Thanks!

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Post by Mitch » May 28th, 2011, 4:56 pm

Hello. My name is Mitch. I am 56 years old and live in Northwest Indiana. I had my first heart attack in 1989 at the age of 34 caused by 100% blockage of my RCA and 90% blockage of my LAD. I had double-bypass surgery (RCA and LAD) at that time and have been in chronic Afib since then. I guess it's pretty common after bypass surgery. For many years my cardiologist said that Afib was pretty benign and nothing to really worry about. They've tried a couple of cardioversions over the years to convert me to sinus with no success.

I had my second heart attack in 1998 because of a 100% occlusion in my RCA bypass. Because of the resulting muscle damage, they did not do an anigioplasty or another bypass of my RCA - no sense in supplying blood to damaged muscle. So, in effect, I lost my RCA and the muscle it supported, but I got to take even more wonderful meds. Over the years I've also had angioplasties on my Circumflex artery (1996) and my Left Main artery (2007).

During my annual stress test and echo in 2006, my cardiologist said that my EF was too low and recommended I see the Director of EP at the University of Chicago. Long story short, I received a dual chamber Medtronic Virtuoso ICD in November of 2006. A few months later I find out I have the recalled 6949 lead installed. But (no surprise here) they said that replacement of the lead was riskier to the patient than just leaving it in, so I still have it.

And now to the point of why I am here: I had my first "shock" about two weeks ago, apparently because I went into Vfib. They started me on Amiodarone afterwards but I was still going into Vtach too often (dizzy spells, but the ICD would "pace me out of it" before a shock was required). So I spent last weekend in the hospital while they adjusted my Amio dosage and monitored me. Sooooooo......now they want to do an ventricular ablation and replace my two-lead ICD with a three-lead model. I meet with the EP at the U of C on June 6th to discuss these procedures.

In my Google searches about ICD's and ablation, I found this support group and think it would be beneficial to me to see other folk's experiences. I can see I am not alone....

From a personal perspective, I am retired from IBM, single with no kids, a golfer and an avid motorcycle rider. I have a 2010 HD Ultra Classic CVO and a 2005 custom chopper built by Mid-West Choppers. I keep my knees in the breeze as much as I can.

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Two Heart Attacks - 1989 and 1998
Double Bypass, LAD and RCA - 1989
Chronic A-fib since bypass
Three angioplasties - 1996, 2007, and 2011
Medtronic Virtuoso ICD installed - 2006
First (and only) shock, due to VT - May 2011
Ventricular Ablation - July 2011
Medtronic Evera ICD installed - December 2013
Drugs: Digoxin .25mg, Lisinopril 80mg, Carvedilol 12.5mg, Warfarin 7.5mg, Levoxyl .175mg, Atorvastatin 40mg, Effient 10mg, Furosemide 40mg, Aspirin 81mg

My intro: http://www.icdsupportgroup.org/board/vi ... 308#p76308


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Post by truckert » May 28th, 2011, 8:51 pm

Hi everyone,
I had a mi in October, 2006. My LAD was blocked. Angioplasty and stent done. My yearly stress test, echo's, etc. said my ef was usually less than 30%. This year my cardiologist said that I needed to get an ICD for primary prevention of SCD. Enormous shock to me, my life has been turned upside down. I have had no symptoms since my heart attack. I exercise regularly and strenuously. So I now have an ICD. I have a question that hopefully someone can help with. Does anyone know of a study (trial) that has summarized the ICD interrogations the ep's do each quarter. I am interested in what percentage of people receive appropriate shocks, and what are risk factors that these people have in common? From what I have found, most people never get an appropriate shock. My ICD cost about $150,000.00 so far. It seems like too high of a price for not really knowing who will get a benefit from the device.


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Post by Lianachan » June 2nd, 2011, 1:56 am


My name is Ulric. I suffered a VF arrest a few months ago and after CABGx2 I was told I had to have an ICD too. Initially I had deep misgivings about this but I had a great conversation with the technician at the pre-op assessment who changed my mind. She established good rapport and realised I needed lots of technical information. I told her some things that were red lines for me and it was agreed it would be configured in line with my wishes. I couldn't have wished for more.

Recently I had my first routine interrogation but these are at a clinic at my local hospital who don't do the fittings. Unfortunately I didn't take to the technician here at all and he was extremely offhand and incommunicative. He read the data, chatted to a colleague about it for ages without speaking to me, then did a quick physical exam and told me I could go. No mention of doing any changes. When I queried if anything had been done he replied 'nothing you'd notice' then walked out of the room.

Now this has confirmed all my worst fears about having the implant. Loss of autonomy and a toy for other people to play around with - with the console turned away from me so I can't see what they are doing. Apparently they don't need my consent for this treatment nor do they need to bother me with the details of what they've done to my body.

I am still figuring out how to follow up on this but rest assured I will not be going back to this clinic, at least with that technician.

Ulric (in the UK)

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