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

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Colin Pearson
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Post by Colin Pearson » May 4th, 2017, 4:27 am

Heartbroke wrote:
icdadmin wrote:Use this thread to introduce yourself at "ICD Support Group".
Hi my name is Tim I had the widow maker June 30 2012 I went into cardiac arrest 8 times kept in a drug induced coma for 3 weeks with hypothermia. 3 months after I got out of the hospital my ef was only 20% so they installed a St Jude Diffibrilator I went 3 years before I received a shock then easter 2016 I was at the register in my local home Depot and got a shock that knocked me in the floor the ambulance was called when I was loaded in I started getting shocked again the shocks were so often they couldn't get a iv in the closest heart hospital was 30 mins away by the time they got me to the hospital and finally got an IV in with six people holding me down they gave me amiodarone and cardizem to get it stopped in 40 mins. I received 84 concious shocks.

Again, sorry for the delay in anyone responding.

What you have been through is truely horrific, I think the previous record on here is something like 56 shocks.

I've just been through similar but with only two shocks, the amio calmed things down quickly.

How are you doing now?

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Colin Pearson
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Post by Colin Pearson » May 4th, 2017, 4:31 am

Houdini wrote:Hi my name is Jose.

I am a 57-year-old architect and have had my eye ICD for five years. Great to find a resource like this.

My ICD story began with a near death experience in Kawai. While windsurfing, I passed out. After being rescued by my wife, I spent two days in an induced coma. Upon recivery, the doctors implanted an ICD, as my ejection fraction rate was at
35 and I had a history of AF. My current diagnosis is idiopathic ventricular fibrillation. I
have had 4 shocks in almost 5 years. 3 of the four due to high physical stress
like advanced x country sking, basketball etc. I have modified my sports regime.

It's not easy. Especially above the shoulders, as they say.
However, I'm blessed with two wonderful teenagers and wife.
When I'm not working, I read with renewed
interest in poetry, philosophy and science. I've found that
the intersections between art and science
help me cope with my path as an ICD recipient.

Thanks to Bob at ICD support admin for getting me started on this site.

Hello Jose,

I too seem go through exteneded periods of time with nothing, then boom, all hell breaks loose. Sounds like you have your head in the right place through. I really struggle with the 'not knowing'.

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Post by haroldhustonharvey » May 4th, 2017, 7:57 am


My name is Philip. I'm 69, retired, living in La Paz, Bolivia. I have had. Biotronik ICD since 2011. No schocks, yet, just pacing. I have about a year left in my battery life, but cannot afford the cost to replace it. Unless I have a heart attack and it's done aon an in-patient basis, I can expect to pay around $60,000. I don't have that type of money, but am determined to get a replacement somehow. So I'm using time left on my battery to explore options.

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Post by Heartbroke » May 4th, 2017, 11:18 am

Thank you I had my icd replaced in may 2016 with a Diffibrilator​ pace maker combined. That's after my former electrophysiologist sent me home to basically die . I went to another in Atlanta GA. Before I was shocked 84 times I was never diagnosed with right bundle branch block but after the shocks I was diagnosed with it. That's why the pacemaker was put in. I have 3 leads in me now 2 to pace my ventricles to beat together. I'm in a study that only 250 people in the u.s. are going to do. I have nerve damage from the 84 shocks that's permanent. I haven't been shocked since the new I'cd was installed. I stay in constant fear though my new electrophysiologist keeps assuring me I will never get shocked like that again I told him that I never want to be shocked even once again I underwent 6 hours of ablasions for afib in Feb. So far it's worked. And yes the icd that was in me is one that's in the recall for saint jude. I was getting a ekg for preop for a heart catheterization in Feb 2013 and my icd vibrated 4 times I ask the nurse that was doing the ekg if anything she was doing would cause the icd to vibrate she said no . So a saint jude tech checked that day and couldn't find a reason it did it but told me if it ever did it again they would have to replace it. I'm sure the icd was going haywire then my current electrophysiologist by they way is a consultant for saint jude told me I might want to hang on to the old one and I did. I am still debating on whether to have the Diffibrilator part of my icd cut off. Getting shocked once is bad enough but 84 times? I was so sore in my upper body I could hardly move for a month.almost bit my tounge in half during the shocks. For anybody that has a Diffibrilator that has not got shocked let me tell you its violent I'm 6'5" and it knocked me up in the air 3 feet my son said the first shock I received he and my 2 grand kids who were 4 and 3 at the time are the only family members to ever see it happen I would not let them touch me in fear that if I got shocked again that it would hit them to. Another reason I'm thinking about getting the Diffibrilator turned off I found out there is a recall on the lead that's in my right ventricle for the Diffibrilator. My heart is very very weak after the ablasion surgery the Dr. Told me that my heart has a lot of wear and tear on it . Mines genetic I have 7 brothers and four sisters 6 boys and 2 girls have had bad heart issues. I'm 52 years old now I had the massive heart attack at 47 I'm very fortunate to be here I hope these post help people in their decisions on getting icds my brother was told 2 weeks ago he needed one and a pacemaker after he saw about my experience he is thinking very seriously about not getting one.

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Post by Heartbroke » May 4th, 2017, 11:28 am

I had to come off of amiodarone last Oct the side effects were getting to me. Just curious is anybody else having a problem with ringing in their ears? Sometimes mine is unbearable and is there anything or any medication for it? I never had the problem before the 84 shocks.

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Post by Johnnydon44 » June 21st, 2017, 6:31 pm

HI my Name Is John and I have never been on a Message Board before. I just wanted to ask the Question - Are there any of you who have a ICD been able to continue in the welding profession. (MIG) Welding? It's more then debatable that this ICD WAS NOT necessary. They overdosed me with way too much morphine in the Hospital and I went into sever respiratory depression apnea and cardiac arrest and death; which comes with cpr and fractured ribs.
There never was a problem with my heart that required a ICD to be implanted; It was just a CYA procedure done at the patients expence so they would look good.

Thanks . Johnnydon44 You can send your answer to me by email please. My address is (PM or Email me from the link below).

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Post by ArrhythmiaStory » July 10th, 2017, 11:32 am

Hi, my name is Matt and my wife has an ICD implant following diagnosis with life-threatening VT and a subsequent cardiac arrest at home (which I resuscitated her from) a matter of hours after she was discharged from the ED having been told that her problems were not heart-related. The implant procedure has been done three times (because further mistakes were made) and though they eventually got her stable, she is left in chronic pain which will have to be managed for the rest of her life. I have told her story at www.arrhythmiastory.com and I am genuinely interested to exchange experiences with other patients and their partners in particular.
I believe that, in our part of the world (the North of England) medical practice towards arrhythmia patients is not what it should be and I would like to help bring about some positive change that makes it less likely that others will share my wife's painful experience.
Trying to improve arrhythmia services for patients in our area
Our story at https://arrhythmiastory.com

Hank E Pants
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Post by Hank E Pants » August 3rd, 2017, 4:41 pm

Hello Hello! My name is Doug (my greyhound is the original Hank E Pants). I am 43 years old and live in Minnesota. I received my Medtronic Evera ICD in November of 2014 after my Medtronic LINQ recorded 5 seconds of non-sustained VT. This was after 2 episodes of syncope and countless episodes of near syncope. My first implant went wrong when I failed 7 DFT test, then I had a lead dislodgement followed by a second surgery to fix the dislodgement where I failed 17 more DFT tests. Between the two cases I have had 24 ICD shocks and 12 external shocks to bring me back, all, thankfully, while I was under anesthesia. Recovery was a bear, but I'm "back to normal" now.

I may have a someone unique perspective here as I spent 14 years between 1997 and 2015 working at Medtronic. I've been in 4 different divisions, but spent 8 of those 14 years in the Cardiac division. I even worked on some projects for both the LINQ and Evera devices, so it's a little weird being able to say I had a hand in my own care. I've spent the last year and a half (or so) trying to connect with more and more patients. I'm looking forward to reading through the different topics, and glad to have found this forum. Thanks for having me.

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Post by Jeannie » August 6th, 2017, 10:12 pm

My name is Jeannie and I hope that I do this right! I am 48 years old and I have Moderate left ventricular systolic dysfunction, Paroxysmal SVT (supraventricular tachycardia), Left bundle branch block, and an ejection fraction of 34%... I also have Multiple Sclerosis.

I am getting an ICD on Tuesday and I am petrified. I searched for online support groups and came across this one so here I am!
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I am made entirely of flaws..stitched together with the best of intentions.

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Post by angela_rose86 » August 9th, 2017, 9:02 am

Hey, everyone. I'm Angela. I just turned 31. I live in a small town about an hour from Buffalo, NY, with my amazing fiance.

When I was 13, I was diagnosed with hypertrophic cardiomyopathy. I started taking a Beta Blocker, and with the exception of a few limitations, I was leading a pretty normal life. Fast forward to September, 2016: I started developing symptoms-sob, chest pains, etc. An EKG revealed that my HCM had actually progressed and now had formed an obstruction. After many months of testing, it was decided my best option would be an alcohol septal ablation. I had that done May 16, 2017. I also received a Boston Scientific S-ICD. After a few days, I started having some issues, died twice. What I do remember of it was very scary. I was transported via Mercy Flight to Rochester, about 2 1/2 hours away. I was diagnosed as having a complete heart block, which is very common after an ablation. So, on May 25, I also received a pacemaker. So now, I am the owner of 2 brand new devices.

Still trying to get used to a whole new way of life for me. I am hoping to meet some people on here who had similar experiencea that could maybe help me work through some stuff.

Sorry about the book. Lol. I hope that everyone is doing well, and I can't wait to interact with all of you!

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Post by Nick » August 14th, 2017, 10:21 am


I'm Nick from Boise, ID. I left the Bay Area last year to slow my roll and retired early. As they say, Life is Good! Until I was diagnosed with Left Ventricular Non-compaction (LVNC). It was kind of strange to find out at the age of 49 that I have a birth defect. I am fortunate the Doctors here have been on their game and were able to diagnose and treat my condition. I received a loop recorder last November that helped them track some pauses and as soon as things started getting worse they were at the ready to battle the insurance co. and get my ICD approved. I'm just one week in but no shocks and I already feel like I'm getting better oxygen.

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Post by CHFLady » September 14th, 2017, 2:43 am

Hi Everyone,

My name is Lori and I have Congestive Heart Failure, artificial mitral valve and a St. Jude icd.

I am pretty sure I've been in this group before, but lost my password years ago and couldn't get back on. So I've been doing fine on my own (with my extremely supportive husband and daughter), but now need to talk again with other icd folks.

Life takes a turn
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Post by Life takes a turn » October 3rd, 2017, 12:38 pm

Good day everyone.

My name is Ed. I'm a 44 year-old male, living in the Fort Lauderdale area. Last September, after a few weeks / months of feeling bloated, and after being some medication (atenelol) to treat my high blood pressure, I started to develop edema around my feet & ankles. I was also having real trouble sleeping at night. One morning, I woke up and tried lifting my legs to help deal with the edema. I immediately felt a strange tingling sensation in my left arm and just felt "woozy." I awoke my wife & asked her to take me to the emergency room. It just didn't feel right.

They admitted me, commented on how green I looked and after several tests, extracted almost 8-10 liters of fluid out of me. They transferred me to another hospital and admitted me to cardiac ward. There, I received a cardiac cath, but was told that there were no blockages. However, they informed me that my heart was enlarged and that my EF was between 10 - 15%. I heard the word "transplant" muttered in hushed tones. I was terrified. I was released a week later and began a combination of Carvedilol (now on 2x 12.5 mg; twice a day); Entresto (began on low dose; am now on 49/51 mg twice a day) and Aldactone (25mg 1x a day). Almost had one fainting spell, but slowly felt better. At this point, was on short-term disability leave. I was a VP at a multi-national, and for the time being, put my traveling to rest. I went into the hospital at 305 lbs; left with around 278 lbs...since then, I've managed to get down to 253 lbs and am still working towards my goal of 225.

Back in December, they informed me that the EF had improved to 25, but that I'd need to look at getting an ICD implanted. I'm embarassed to say it - but I freaked out. Sold the house, packed my belongings, and took wife with me to Europe (where both of our families live) hoping that a health sabbatical would help me heal. Fast forward to April, 2017 and my EF was recorded as 30 (via echocardiogram). But I could see that an ICD was still a possibility. Returned to the US.

Got re-settled. Found a new cardiologist. And she's been testing me (MRI, pet scan, etc.). Scarring on about 15%, EF measured at 28%. Heart inflammation. Her hypothesis was cardiac sarcoidosis. Got my eyes tested, got my lungs tested and during my recent ICD implant (Sept. 26th; Medtronic), they also performed a heart biopsy (3 samples taken). All those tests have come up negative for sarcoidosis...but she still wants me to meet with sarcoidosis specialist and talk about starting Prednisone treatment.

On this board, I've read countless stories re. the stress / anxiety of learning to cope with living with an ICD. Thank you for your submissions. In the few days post surgery, I'm coping "OK," but it's the fact that there doesn't seem to be any down time for me until I have to look at potentially starting a new round of therapy (Prednisone) which, as I've read, seems to have it's own drawbacks & limitations that's causing me to go slightly bonkers. Don't get me wrong, I'm grateful for every day & oftentimes, I feel quite good physically. But the anxiety of the unknown and continuing battle to try & get an answer re. long-term disability that have me at wit's end. I'm willing to go back to work - but i'm certain that the lifestyle (stress; lack of sleep; diet, etc.) helped lead me to all this. But life's too precious to give up. Those of you who have been willing to share & guide - thank you. It's meant all the difference in the world.

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Post by jbilotta » October 22nd, 2017, 5:31 am

Hello! My name is Lisa and I am from the Berkshires in western MA. I am 47 and found out in March I have non obstructive Hypertrophic Cardiomyopathy. I was in and out of the ER for arrythmias, shortness of breath, chest pain, near fainting episodes, etc multiple times before having a few heart monitors placed that picked up some non sustained vt. Finally got on verapamil in June that made all the difference and I could return to feeling normal. I had some cousins have SCD episodes (one passed, one had transplant) probably from outside our bloodline, so I was gray area for an icd. Meanwhile, I had 3 of my 4 children checked and cleared. My oldest, at 21 and newly married, did not get checked in time, even with near fainting episodes and a constant murmur, until he collapsed with SCD on Sept 2 of this year from severe obstructive hcm. Thankfully, he was part of the 8% that survived due to immediate bystander cpr. He was flown to another hospital to be in CCU on hypothermia and breathing tubes for a few days. He walked out with a biotronik icd only a week after his event. We are so very, very thankful. I was most thankful that I had gone through my initial hcm journey because I am an avid researcher and I was fully aware of everything that was happening to him and could explain to family what was coming next and what not to worry about. He has since mostly recovered with physical stamina the last to come back fully. Sweet boy that he is, he gave me back the blessing of genetic hcm....I now had a 1st degree relative with scd, so I have my shiny new biotronik icd implanted 2 days ago on Oct 19. We are taking the mother/son bonding thing to a whole new level ;) I was depressed for weeks before getting the implant. I had always been healthy, except for Lyme a couple times, to the point that I hadn't been on antibiotics since I was a kid up to my lyme episodes a couple years ago. No meds, no issues, and mostly used natural remedies. My depression came from having to take a heart med the rest of my life, and now, having a foreign implant forever, and future surgeries on tap at regular intervals *without complications. BUT, I am fully aware that this is also a gift, that God knows the future and what I need, so I am taking this at face value for the insurance it is, and someday possible lifesaver. I am thankful there is a place here I can come for added advice, perspective and comraderie along my new journey. Looking forward to meeting and getting to know you all.

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Post by KissedByLucille » October 22nd, 2017, 2:24 pm

Hello! I’m new to this site and hope to make some online friends and get answers to issues as they arise.

My story to come shortly...just struggling to get an avatar linked

Some of my interests include: Gardens, Landscaping, Maritime activities, Marksmanship, Work & Play, Human Perfromance, Storytelling, Cooking, & Exercise...soon I hope.
Medtronic Viva Quad CRT-D, December 2014

No man is entirely useless, he can always serve as a bad example!

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