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

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Post by kismet863 » December 4th, 2011, 12:37 pm

I am Sonya. I'm 48 years old and live in Jamaica Estates, New York. I'm a Pre K Teacher in an Public Elementary school and I love it!

I got my Medtronic AICD on September 12, 2008, and I I've had one shock. I also have "Brugada Syndrome"! My heart stopped while I was driving due to high temperature which brought out my syndrome thankfully! It actually saved my life. After getting my temperature under control and being in the hospital 8 weeks i was scheduled to have my surgery for the implant "two days later". I'm thankful to be alive and take nothing for granted!

Ciao for now, Sonya

Laura G.

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Post by Laura G. » December 15th, 2011, 3:50 am

Aloha! I am so glad to find all of you.

My name is Laura Gharazeddine. (Everyone calls me Laura G. or the Pyrate Queene.) I live in Kailua-Kona on the Big Island of Hawaii. (Or as I like to say, I live in a one and a half horse town, on a rock in the middle of the ocean at the edge of the world.) "It's small, this Big Island" is the local saying because the population is so small here and the population centers few. Go to Hilo, and you'll met someone on the street you know from Kona side! Crazy! I moved 3 years ago from San Clemente, California.

Anyway, my story... tahdahh

Four days ago, I went to the cardiologist for a follow up appointment-and out of no where they told me I was getting an ICD for Christmas! Yikes!

In August, I had a stroke-my second in about 12 years. This time, I had speech issues (which are since resolved.) But in the course of going through exams and diagnostics to find out the reason I had the stroke, they found several interesting things. One was that I had a PFO! (A hole in my heart.) Which really explained a lot of discomfort I'd had my entire life! Another thing they found was that I have a blockage somewhere in my left arm or shoulder, causing a reverse flow in the artery in my neck. And the third thing they found was that the left ventricle in my heart was damaged from the chemo I had for Lymphoma about 15 years ago. The PFO closure was easy peasy and done the 17th of November. (It was decided that the cause of the stroke was most likely due to scuba diving with the hole. If you have that and don't have it closed, you can never dive!)

When I had seen the cardiologist in October who reviewed my case and recommended me for the PFO closure, he was very concerned about the heart function from the chemo. He couldn't believe that I have been as active as I have been with all that! He put me on some heart meds, but it lowered my BP way too much. So that was stopped and I went on to the next step-the PFO closure.

I was really thrown for a loop when I was told on Saturday that I was getting the ICD. Feeling very anxious-about so many things now! The size of the thing freaks me out a bit-I'm a bit thin, especially in the chest area. I already have a port-a-cath on the left side-and now I'll have something the size of a pager on the other size! I won't be able to comfortably wear a seat belt on either side!

And I'm anxious about if I'll be able to dive again, to stand up paddle. Anxious that I'll damage it somehow. Anxious about what the shocks feel like. Anxious about how do you walk into a store when they all seem to have those security gates!

Cancer I can handle. Seizures I can deal with. But this thing is freaking me out!

Well, I do feel a bit better having shared and can't wait to hear from everyone their advice and experiences.

Mahalo nui loa,
Laura G.

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Joined: December 7th, 2011, 8:59 am
Location: Long Beach, MS

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Post by Shanks » December 15th, 2011, 9:27 am

Hello everybody!

My name is Scott and have recently had my ICD (Medtronic Protecta DR) put in this last week. So far so good and everything healing well.

Little about myself and how I got to this point. I am 39 from upstate New York and have 22 years active service in the US Navy Seabee's and will retire in Sept 2012 because of all of my new medical issues. I live in Long Beach, MS currently and when all my initial symptoms came to the surface (shortness of breath, light headness, vomiting, euphoria, falling down etc...) I was blaming all of this on getting a lil older, the humidity, stress, work overload and maybe a rum and coke to many. I am glad I googled all the symptoms and finally listened to my body and wife to take myself in to get looked at by a doctor. Upon arrival my heart rate was 200+ bpm due to A-fib so I got a nice ambulance ride and a 2 week vacation in local hospital and found out Ef was below 15%. Upon release I played the medicine adjustment game for months but that wasnt helping. Then we tried 3 cardioversions that would only hold me in sinus rythym for a few weeks and then flip back out. Told doc I was getiing A-fib like a menstural cycle and he just laughed! Next step was an ablation surgery to all sides of my heart and that finally took me out of A-fib but dropped my heart rate down to 40 bpm and into Bradycardia but EF was up to 30'ish. Tried meds for a few more months and then I pushed him into the ICD so I would at least have the safety net of the defibrillator and the pacing compability which now is being used constantly to keep my heart rate at a steady 60 bpm now. 6 days after surgery I feel so much better with more energy and pep but I know I need to keep things slow to recover properly. Go back next week to get staples out and to have first visit with Medtronic Tech to see how this all works for the future. Fingers are crossed for a positive and bright outcome to all this craziness. Now I will sit back and work on getting myself retired from the Navy and working the VA system.

Thanks for having a forum that we can meet others with similar issues and to learn from each others past, present and future. Good Luck everyone and nice to meet you all.

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Scott Allen
Long Beach, MS
A-Fib/Tachycardia/Non-ischemic cardiomyopathy (Mar 11)
Left/Right Atrial Ablation (Oct 11)
Bradycadia with long VT (Nov 11)
AICD Medtronics Protecta DR (Dec 11)
Atrial Ablation #2 (Jan 12)
Atrial Ablation #3 (Mar 13)
10mg lisinoprol, 100mg Metoprolol, 40mg Forosemide, 20mg Xarelto, 400mg Amiodarone, Spironolactone 25 mg, 1mg Xanax.
EF in March 2011 10%, EF in Sep 11 25-30'ish% and now Mar 12...40-45%.
Email: sallen133@yahoo.com
Intro: http://www.icdsupportgroup.org/board/vi ... 756#p85756
FaceBool: https://www.facebook.com/#!/scott.allen133

Posts: 1
Joined: December 13th, 2011, 3:33 pm

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Post by kanyon » December 15th, 2011, 12:34 pm

Hi my name is Kyle. I'm 29 years old from upstate New York. I was diagnosed with dilated cardiomyopathy at the end of August and had an ICD implanted recently.


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Post by HemiGirl » December 23rd, 2011, 6:46 am

My name is Christie. I am 40 and live in Georgia with my husband. I received my Medtronic ICD in August. So far so good.
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Post by andrewr138 » December 23rd, 2011, 4:41 pm

Hello everyone,

My name is Andrew and I just got my 3rd ICD put in yesterday. I'm 25, currently reside in south NJ, and have ARVD. Got my first ICD when I was 17 and like I said, just got my 3rd one. I had endocarditis so the 2nd one was removed in October. Happy Holidays!

Posts: 25
Joined: December 25th, 2011, 7:29 pm

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Post by diehard » January 1st, 2012, 5:56 pm

Hi, my name is Rick, and I live in New Zealand, about an hour's drive from the capital of Wellington on the coast. I am married and 2 year old popichon. I am a family therapist, and spend my time writing therapy books and doing workshops.

I had my first heart attack when I was 44, and had to be resusciated in the ambulance on the way to the hospital. Once in the hospital, they did an angiogram and then angioplasty. That lasted for two years, and then I started getting a shortness of breath on the beach. I went in for a stress test, and ended up having a stent put in.

I was good for about 17 years. I worked out every day, lifting weights and doing cardio. I am a vegetarian, and was in the best shape of my life. I was doing Zumba (don't laugh) and started to feel a bit funny, sorta tired and not quite right. I danced to another song, and then quit. I started feeling light headed as I went to take a shower. I had an appointment to get my haircut, so I waited around the library next door until my appointment arrived. I got my haircut, and then went home. My wife took one look at me, said I was as white as a sheet, and called the ambulance. The paramedics came, and had me helicoptered to Wellington Hospital along the coast, about a 14 minute trip. Unfortunately, I didn't enjoy the scenery, as the sunlight was in my eyes. I told the medic that they needed to have sunglasses available.

Anyway, the emergency room doctor said my heart was beating way too fast, and that I had VT. They gave me some medicine that didn't work, so they sedated and paddled me. It worked. The cardiac surgeon came around and suggested that I get an ICD put in. He said that there would be a small lump in my chest, but otherwise I could return to life as normal, albeit slower. He said I could do cardio and lift weights, but just light weights.

That was almost 4 months ago. So at 60, I'm starting my 3rd life. I still feel the scar tissue when I stretch or lift anything. I feel good, and walk my dog Tai on the beach every day. I'm in the process of getting started again with light cardio and weights. I look forward to communicating with everyone, as I have heaps of questions.



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Post by BigDB71 » January 13th, 2012, 5:53 pm

I am new to this forum stuff so be patient. My name is Dana and have congenital heart problems. I have had an ICD since 2002 and glad I found this site. I am 40 years young and live in Ohio.


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Post by davis5389 » January 19th, 2012, 2:30 am

I am Ron Davis. I had an ICD planted one year ago due to V-Tach caused by hypertropic cardiomyopathy. I just found this site a couple weeks ago and thought that it may be something useful. I am 36 years old from southern Illinois. I am a former truck driver but due to the ICD I had to resign.


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Post by implement » January 19th, 2012, 8:50 am

Hi all -

Bob Whelan of Sharon, Connecticut. I'm 57, and generally in very good health. I'm a cyclist (long road rides - >2500 miles/year) and skier, own three companies - a large retail Home Center, a Software company and a Systems Integration/Implementation firm, and have been married for 35 years.

My youngest son (21) and I are having ICD's put in at Tufts in Boston on 1/26/12. We lost our oldest son to VT in September 2011 (he had HCM), and my other two sons and I have HCM as well, albeit relatively (comparatively) mild cases . My middle son (25) is resisting, somewhat, at this point. He lives in Los Angeles and has a very healthy and actively athletic lifestyle which he believes mitigates his risk.

The electrophysiologist is leaning towards the Boston Scientific (Guidant) Teligen ICD and Reliance leads. First, does anyone have the Cameron Health S-ICD (in clinical trials) on this forum? Second, does anyone have any experience with the Guidant ICD, good or otherwise?

Third, I have a great deal of hesitation about an ICD at my age - sort of a "if it hasn't killed me yet, it probably isn't" kind of attitude (especially given my lifestyle when I was younger). I have no obstruction, mild scarring and my left ventricular septum wall is only 20mm. None of my sons nor I have any outward symptoms (shortness of breath, syncope) and while I can certainly understand the insurance value of the ICD, I just wonder if in this case the cure is worse than the disease....

I look to hear from others willing to share their experiences and circumstances.

Best to all for 2012.


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Post by Pacificator » January 19th, 2012, 1:18 pm

Hi everyone!

Im Jennifer, 28year old.
I have 2 children, Jade 4½year and little Oliver 5 months old. And not to forget my husband to be -Olov!
We live in a house outside of Östersund in Sweden.
Beside my heart im a very healty and active person!

I have a number of heartissues since birth, me and my 2 older sisters have most likely almost the same.
Petra who is 40 have a "ordinary" pacemaker & Maria 44 have no "machinery" but eats 200mg SelokenSoc/day.

I always had it under "control" whitout medicines and so on, but a few years ago I started to feel more and more "tired".
After giving birth to Oliver in August 2011 it all went downwards, and in late October I feel down in my kitchen.
I have collapsed sometimes every 4th year or so my whole life and never thought it was anything else but tiredness, but I now know my heart stops.

I now have a St.Jude ICD and eats 50mg SelokenSOC/day.

I got my St.Jude ICD 23/11-11, but 12/12-11 I had to redoo the operation since both the chords went loose.
And now, 13/1-12 (Friday the 13th) i did it again, they switch one of the chords and changed place of the ICD as it had slide to my armpit.

Im SO afraid that its gona go wrong again, and also too get a shock. Ive been in hospital for almost half my youngest sons life :(
Hope it will stay in place this time!

Sorry for my bad english, hope youll all understand and I havnt got hold on how to get a picture in here yet, but soon!

Im sooo thankful ive found you all so I dont feel so alone anymore!

Best reguards - Jennifer

Posts: 90
Joined: January 8th, 2012, 9:48 pm

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Post by rorktm » January 26th, 2012, 12:02 am

Hello Everyone.

My name is Todd. I am married and the proud father of a 3 month old son and a 3 year old daughter. I live in Maryland just north of DC. I was in good health and did not have any medical problems until November of 2011. In November, I became light headed over a 4 or 5 second period and ended up semi-conscious for a short time. Fortunately, I came to enough to call for help. I felt a fluttering in my chest, had a shortness of breath, and was very weak. I initially thought it may be an allergic reaction to something since I was in very good health, or at least I thought so. In the hospital, they told me I was in full heart block. After a heart catherization, they determined there were no blocked arteries. They hooked me up to a temporary pace maker and told me I most likely had an infection that had damaged my heart to the point it resulted in a full heart block. After 3 days of donating lots of blood for every test the doctors could think of, they could not find anything. The doctors suspect it was a virus that did the damage, but they can’t prove it. Because I had a heart block, I had to have a pace maker to keep my heart beating properly. My EF is only 20%, even with the pace maker. My cardiologist also told me I was at risk for developing arrhythmia problems given the state of my heart. Therefore, I had a St Jude BiV-ICD implanted. I had to return for surgery 3 weeks later because the lead in my right atrium became displaced and had to be repositioned for proper pacing. My formal diagnosis was idiopathic non-ischemic cardiomyopathy. So far, I have been doing fairly well and have not experienced any shocks.
I found this forum which has a lot of good advice about living with an ICD and would like to be part of it. I look forward to being part of the forum and interacting with others who have ICDs.


Posts: 36
Joined: December 20th, 2011, 11:09 pm
Location: Wake Forest, North Carolina

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Post by Teresa » January 28th, 2012, 2:25 am

Hello, I am 52 years old and received my ICD November 30, 2011 following sudden cardiac death episode on November 22. When I was 27 had a major heart attack which resulted in some permanent damage. For 24 years I did really well. About two years ago my ejection fraction started slipping below 30 and my doctor recommended an ICD and I did talk with an EP about it last April. So I decided to retire and get some things in order around my house and enjoy a couple of months of retirement and planned to have the surgery in January 2012. However, as noted above, the SCD happened in November. It was a traumatic event. I was in the hospital for almost 2 weeks. I know that having the ICD is a good thing. My regret is I waited until it was almost too late. I survived SCD because my husband was home when it happened and he did chest compressions until the ambulance came. I am so blessed to have him. I don't mind the ICD, it's the living with and accepting that I have heart failure that haunts me and keeps me up at night. I am working hard to get back to living. I am trying hard to concentrate on the good and not the bad. There are days it is a challenge, but the bottom line is I am so happy to be alive.
Heart attack & bypass surgery 4/87
Sudden Cardia Death event 11/22/11
ICD implanted 11/30/11
Diagnosis: Ischemic Cardiomyopathy & heart failure


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Post by trevortheweather » January 31st, 2012, 2:43 am

Hi all and thanks for letting me join your community,

I am Trevor a 57 year old from England who is in-line to receive an ICD in the not too distant future after a couple of heart attacks since I turned 50. Must admit the thought of having a device implanted is a bit scarey but having spoken to a person already who'd had one fitted a while back he had no regrets and only praise for it.

My main interests are gadgets of all descriptions, travelling, internet buying and selling and model boats (though these may have to go if the radio controls are going to interfere with my ICD).

Anyway, I shall look forward to chatting with you all soon and getting your advice.

Best Wishes

Trevor :wink:

P.S. Sorry for posting in the wrong place last time

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Joined: January 27th, 2012, 11:34 pm
Location: Knotts Island, NC USA

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Post by 4EverHopeful » February 1st, 2012, 8:31 pm

Hi I am so glad to have found this site! I have been reading it for several weeks and found it to be very helpful and inviting. This is my first time to join any site for I am not even on Facebook!

Back in Sept 2011 I was diagnosed with non-ischemic dilated cardiomyophy. The past four months they have been trying to shrink and strengthen my heart with meds but last echo 2 weeks ago still showed my EF at 20% with increased PVCs. I am now scheduled for an implantation of a BiV ICD Feb 24th.

My husband and I live in North Carolina and have owned our own business for 28+ years. Our business is located in Virginia and we commute the 30 miles each way. Back in August of 2008 my husband fell 35ft at work and was seriously injured (angels were with him that day for it could of been so much worse!). He came back to work extremely part time for 2 1/2 years but in January 2010 the doctors took him out of work permanently for he is permanently partially disabled. Since then I have been running the business myself in between the 10-12 doctor appointments per month that I take my husband to (he hasn't driven since accident).

Since January 2010 I have been concentrating on closing down the business, but due to contracts we had in place I had to do it over several months. Then it took several more months to get all the business assets and inventory ready for auction. We finally had the auction in December and I officially closed the business as of Dec 16, 2011.

I say all this to set the stage as to how I came to miraculously yet ignorantly found out about my condition.

I have been weight lifting for 18 years as well as cardio 3 times per week. After my husband's accident I had to quit the gym for 9 months and then started back up again about 2 years ago. I felt pretty good until about the last year. I notice that my workouts were getting harder and harder to complete and I couldn't lift the weights I use to. I also was extremely tired and started having labored breathing.

Over the years I had trained my body to ignore pain especially good pain (working out pain). I had been having left shoulder/neck pain for several years and learned to baby it back to health whenever it would flared up. In the last year I had been having chest pains too that started in the left shoulder area and eventually radiated down around my left side as well as shooting sharp pain to my neck and jaw. Also I was getting a belly which I never had before. I usually can drop the pounds quickly but this time it wasn't happening.

In Sept 2011 the pain increased and so did the tiredness. I just attributed it to everything that was going on in my life for I was burning the candle at both ends and I was getting older. One morning while driving to work the pain in my chest was so sharp that I thought I was having a heart attack. I drove myself to the nearest Patient First office. The doc did a EKG and stated he thought the pain was muscles but did notice that I had LBBB (left bundle branch block). I was not having a heart attack at the moment but he did refer my to a cardio doc to have it further looked into. Apparently many people can have LBBB all their lives with no consequences and no symptoms or dangers.

Long story short, they did a series of tests and thought I had had a heart attack for there was damage to my interior ventricular wall and a low EF (20%). They set up a heart cath to repair if necessary. The heart cath showed no heart attack, in fact my doc said that my arteries were clean as a whistle. He attributed the damage to a virus. I am still puzzled by that for I am the one in the family who never gets sick and considered the "healthy one".

I have been doing a lot of research on ICDs and found this forum. I have learned so much and in fact am looking forward to getting my ICD Feb 24th. My heart is constantly flip flopping and thumping and racing to the point it's down right scarry at times. My breathing is getting more winded and I'm even more tired now that they have me on all these meds. I had low to normal blood pressure before meds, but now it's even lower.

BTW, the chest pain I was having was actually reflux. The cardio doc said that's what it could be and I argued that it couldn't be. Just to humor them I got some reflux meds and took for 14 days and the chest pains completely left! This is why I say the fact that I found out about my condition was a miracle for if it weren't for the chest pain I would of never gone to the doctor in the first place because of what was going on at the time. Oh yeah, did I mention I have a daughter in college and have physically moved her 5 times in the last 4 years including last July!! This was God's way of getting my attention and making me go to the doctor so I praise Him for that:)

God's prescription for the heart:
O LORD, You have examined my heart and know everything about me. You know when I sit
down or stand up. You know my every thought when far away. You chart the path ahead of me
and tell me where to stop and rest. Every moment You know where I am.
Psalm 139:1-3

Non-ischemic DCM 09/11
PVCs, LBBB, leaky mitral valve
St Judes CRT-D (Bubba) 02/12; (Bubba II) 09/17
EF 20% 09/11; 25% 07/12; 35% 02/16
Failed PVC Ablation 11/12
Coreg, Zestril, Asprin, Aldactone, Lasix, Zocor, Levothroid

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