.·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

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

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MikeI
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Location: Walkersville MD
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Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by MikeI » December 15th, 2016, 9:58 am

Hello Drake!

Your story seems all to familiar. I drove myself to the ER, My wife thought I was just over reacting. When I called to tell her I wasn't coming home that night she felt REALLY BAD.

ChrisF
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Joined: August 13th, 2016, 3:55 pm
Location: Idaho Falls, ID

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by ChrisF » December 15th, 2016, 10:39 pm

ChrisF wrote:Hello Everyone,

My name is Chris. I am a 59 year old man. I was thrilled to find this support group. I have had a Boston Scientific ICD implant since December 10th, 2015. The first sign of a problem was in October 2007 when I experienced A-fib. It happened several times, but would always stop on its own. Ultimately I ended up in the ER for a bout that was ongoing. Come to find out, I was born with a bicuspid aortic valve. Before this, I had never had any serious health issues. I was diagnosed with an aortic stenosis, and told that I had some time, but that I would have to have open heart surgery to have the valve replaced.

I spent the next 4 years in and out of ER and the hospital, nearly every time for electrical cardioversion or cardioversion with drugs. Finally by April 2011, I just couldn't get to feeling well. I went to bed one night, and when I went to lie down, I realized I couldn't breath. I sat back up and knew I had better get to the ER. I was diagnosed with congestive heart failure due to the aortic stenosis. With the medical experts efforts, I was feeling much better in a hurry. With drugs, they had excess fluid in my lungs drained off in no time. Before I was released to go home, my doctor talked to me, and said it was time for surgery.

On July 7th 2011, I arrived at the hospital for open heart surgery. I developed pneumonia during surgery and was unconscious and in the ICU for 11 days. I guess I was lucky that I slept through the entire pneumonia episode. I was moved out of ICU and spent another 7 days in the hospital before going home. I had an arrhythmia for about 6 weeks after surgery, but my heartrate was hovering around only 120. One day it corrected on it's own.

I spent 3 months recovering, and at that point I returned to work. I hadn't had any more episodes by then, and I was fairly confident that maybe the A-fib was gone. I was on Amiodarone 400mg per day. My doctor was confident, too, and dropped my dosage in half. In November the A-fib came back with a vengeance, over 200 BPM. I headed to the ER. They managed to get me stabilized, and put me on an Amiodarone drip. I spent 3 days that time, only to go back the day after I had gone home for staph infection in my arm that I got in the hospital. After that, over the years, I have lost count of how many ER trips and hospital stays I have had. I do remember having to go to the ER 3 times in one week in August 2013 for electrical cardioversion each time.

Last December was my first V-Tach episode. My doctor recommended I get the ICD at that time. I received my first shock in May. I didn't pass out. I was standing up at work when it happened. It did the trick in correcting my heart rhythm. I had some short episodes that didn't produce a shock until a week ago on August 7th, 2016. I knew my heart was jumping all over the place, when I got up that morning. This went on for hours. Finally around 5:00pm, I got shocked. I thought that would be it, but I received 4 shocks in all within about 3 minutes. At that point, after I could manage to regain my composure, I checked my heartrate with my finger heartrate monitor. What a relief. It was back to normal.

After more than one shock, you are supposed to go to the ER as it is considered a medical emergency. I called my brother and he came and got me right away. They interrogated my ICD to make sure it operated appropriately. I was admitted into the hospital. The next day on Monday a very nice, extremely caring doctor who is an electrophysiologist, came in and interrogated, and then adjusted my ICD. He said he thought I was getting shocked a bit to readily. He then went on to talk to me about ablation. So on Tuesday I had a successful ablation. I have been on Metoprolol 25mg per day. They doubled my daily dose. I know it takes some time for the ablation to be fully effective while scar tissue forms, and maybe right now it's due to the extra Metoprolol, but since coming home from the hospital, my heart has been beating beautifully without the frequent palpitations I usually experience. I am hopeful once again.

I had some anxiety going on after the multiple shocks, but after reading what other people have to say, I'm feeling more confident that I can deal better with future shocks that may occur. I realize it's there to save my life, and I feel very fortunate to have it. Thank you everyone on this message board. You have already helped me immensely.

Chris

Fjam120
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Joined: November 6th, 2016, 6:50 pm

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by Fjam120 » December 21st, 2016, 8:44 pm

Hi my name is Florence, I had my icd put in Oct 21, due to having hypertrophic cardiomyopathy. I was initially going to have surgery to shave off part of the walls of my heart but after being sent to Mayo Clinic
the doctor there said after a month of wearing a monitor he thought and ICD would work. Thank God. But I am still in pain from the surgery and today makes 60 days. No shocks yet hopefully I never get one. That my story.

jan122016
Posts: 11
Joined: December 26th, 2016, 2:27 pm

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Post by jan122016 » January 4th, 2017, 2:27 pm

jan2.jpg
Hi, I'm Jan. I got a Medtronic ICD implanted a couple weeks ago after a year of chasing different issues: a lowered ejection fraction and slight cardiomyopathy which has improved; shortness of breath and presyncope; SVTs and PVCS and finally VT. I've had beta blockers and ACE inhibitors and also amiodarone (which caused severe shortness of breath for me), and am currently on metoprolol. I'm 61 and active with low-normal blood pressure and pulse, so this is a bit new to me, though for years I know I've had "skipped beats". I'm hoping to get back to skiing, bicycling, hiking and backpacking at high altitude (I live in Durango, CO) if I can figure out how to wear a pack comfortably. I've started running again at short distance and slow pace, but I'm being careful about all the other stuff I'm not supposed to do (arm raising, lifting) :)
Nice to read about all of you who have had ICDs for a long time! Thanks for sharing your experiences.
Jan
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Hal
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Joined: January 5th, 2010, 5:01 pm

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by Hal » January 4th, 2017, 6:03 pm

Hi Jan,
I have had basically the same symptoms as you mentioned - VT, low ejection fraction, etc. I had my Medtronic for 7 years before having it replaced with the latest model about six months ago. I take a high dosage of Metoporal (200mg), as well as an ace inhibitor. When I went into VT 22 times in a month (I was paced out of all of them - no shocks) my cardiologist put me on Amiodarone. He started me on 800 mg/day for two weeks, then 400 for four weeks and now 200 mg. My latest reading was 0 instances of VT for a month, which was due to the Amiodarone. I started with severe dizzyness and very little sleep while on the 80 mg dose. The symptoms lessened quite a bit on 400 mg and have all but disappeared on 200 mg. If you were just on this drug for a short time, I suggest you give it a chance to take effect. You must load your system with a heavy dosage to get it into your system, then taper, when you cardiologist tells you to. I was afraid to take Amiodarone at first, but I have such good results with it after two months, I am happy I stuck with it. Both my cardiologist and my internest have told me that they each have several patients who are on the "low dosage" (200 mg, or 100 mg) and are not having any side effects.
Hal

LauraK
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Joined: November 27th, 2016, 10:39 pm

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by LauraK » January 14th, 2017, 5:20 pm

Hello. My name is Laura (40 years old), and I live in Brooklyn, NY. I’m married to a wonderful man named Alex for the last 3 ½ years. We have no kids, but are contemplating getting a cat this year. Will post pics if we do.

I’ve had a history of a-fib since I was a teenager and had an a-fib ablation in 2008, but just got episodes of VT recently. From August 2016- December 2016, I had an ICD installed, 4 shocks, 3 VT ablations, and 27 days in the hospital. The E.P. thinks I may have ARVC (anyone else here dealing with that?), but it doesn’t seem that I’m a clear-cut case.

I enjoy reading, writing, and cooking all of which I’ve found very therapeutic while I’ve been recovering over the past few months. I also love travelling; meeting new people from all over the world and learning about other cultures.

I grew up in New Jersey, and have since lived in France, Tanzania, India, and Hong Kong. Now in NYC, I work in Human Resources, specifically in Training and Leadership Development, for a financial services company.

I’m looking forward to getting to know you over the forum boards soon.
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Steveb1940
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Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by Steveb1940 » January 15th, 2017, 5:58 pm

My name is Steve. I am 76 and still working as a CFO for a valve manufacturer. In Aug of 2009 I had a mild heart attack. Then in November I went into V-tach because of scar tissue. I have St Jude device and was never shocked until last week. It shocked me 4 times in a row and I was not prepared for it.

I am married and have 5 children and 6 grandchildren.

DaveS
Posts: 1
Joined: March 1st, 2017, 9:04 pm

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by DaveS » March 2nd, 2017, 9:10 am

Greetings!

My name is Dave, and I am scheduled to receive a CRT-D this afternoon. I have been reading through this forum since discovering that I would be getting the device. I am grateful that a resource like this exists and that there are so many compassionate people here willing to provide support.

Wish me luck with my implantation today!

Dave

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luvmydogs
Posts: 155
Joined: April 28th, 2016, 7:05 pm

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by luvmydogs » March 2nd, 2017, 9:15 am

Hello Dave! Yes this is a great place to be. I do wish you luck today. I've only had mine for about 8 months. Give us more info when you have time. Take care.
Joanne (aka Jo)

Kaz1105
Posts: 2
Joined: March 31st, 2017, 8:39 pm

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by Kaz1105 » April 1st, 2017, 5:50 pm

Hi there Im Karen, my husband Matt is due to get an ICD implanted on Tuesday 4th April and he is terrified so I have joined this forum to read some advice about looking after someone with an ICD.

Im from Scotland and live with my husband and my two westies.

mackley1956
Posts: 2
Joined: February 24th, 2017, 6:52 pm

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by mackley1956 » April 3rd, 2017, 11:30 am

Hi everyone,

Just joined the group, but I've had a Medtronic ICD since January, 2005. I was 48 years old when I got my first ICD; I was diagnosed with an idiopathic arrhythmia after experiencing a ventricular tachycardia episode while training for a marathon. I never passed out, but essentially collapsed on the side of the road, having considerable difficulty breathing and certainly unable to walk. Eventually a good samaritan came along (after about 30 minutes of lying in the cold snow) and called the paramedics who thankfully came quickly. They had to shock me with the paddles to get me back to a normal rhythm -- not a pleasant experience as I was still fully conscious. After a series of tests which never determined the cause of the arrhythmia, the doctors decided that the best course of action was to implant an ICD as a precaution since they considered the arrhytmia life threatening.

Being an avid runner, I attempted to continue running after recovering from the ICD surgery, but after several episodes and multiple shocks over the years decided that running was no longer an option. I've also had two cardiac ablation procedures, with the latest one being in September 2015. My doctor decided to do the procedure after I had multiple episodes of pacing therapy (but no shocks), and so far I've had no additional episodes whatsoever.

The first ICD lasted a little over 6 years until the battery level got too low and required replacement. Funny story about that -- I was at work when the battery level got low enough that the ICD started beeping. At first I didn't realize it was me beeping. One of my co-workers asked what that beeping noise was, and I finally figured out that it was me. Called the doctor, and the ICD was replaced within the week. Replacement is a pretty simple procedure.

I've also had to have the wires replaced -- not normally done, but Medtronic leads had a problem with fracturing and needed to be replaced. That procedure is a little dicier because the leads are sometimes difficult to extract because your body tissue tends to grow around them and grab hold. Fortunately, no problems for me and I have good leads now.

I've had my current ICD for about 6 years now, and as of my latest checkup it looks like the battery should be good for another 3 years. The only medication I'm on is metoprolol (a beta blocker).

I'd be lying if I said that I haven't had some anger/frustration about my situation. My heart is otherwise very healthy, so having an arrhythmia that seems to be triggered by one of the things I loved most -- running -- was a big blow. But, with a lot of trial and error (and some shocks) I've learned how active I can be and have adjusted accordingly. I walk about 6 miles a day, and I can still ski, hike, and bike at reasonable levels. I still miss running, but have learned to live without it. And that is the key -- I am thankful to be alive and thriving with what is considered to be a life-threatening condition.

Mike Ackley

DaveTheLoser
Posts: 2
Joined: October 31st, 2016, 6:07 pm

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by DaveTheLoser » April 9th, 2017, 12:13 pm

I had a sudden cardiac arrest while riding my bike the day after my mother whom I was a caregiver for 8 years died.

I have Ventricular tachycardia.

I got my first ICD in May of 2010.

I got my second ICD in October of 2016.

I have had about 14 to 16 shocks. I have lost track of the real total. All delivered while riding my bike.

I was able to go 4 years without a shock by taking my beta blocker consistently. That was up until the last 2 shocks. Especially the last one where I did everything and more right and still had a shock.

I have now given up an activity that I loved for 25 years due to fear of shocks.

I would rather die than face the embarrassment of receiving a shock in front of others.

I don't have any family. No brothers, sisters, parents. I have one friend in the world and sometimes I wish I could be nicer to her.

I am an only child and have spent the majority of my life alone. I met my one friend in 2011.

I am afraid a lot.

It's nice to meet everyone.

Thanks for having a spot for me here.

Dave

Heartbroke
Posts: 43
Joined: April 1st, 2017, 11:07 pm

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by Heartbroke » April 24th, 2017, 1:32 pm

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.

Houdini
Posts: 1
Joined: March 28th, 2017, 1:37 am

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by Houdini » May 4th, 2017, 12:51 am

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.

Best,
Jose

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Colin Pearson
Posts: 909
Joined: August 12th, 2013, 6:25 am
Location: Berkshire England

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by Colin Pearson » May 4th, 2017, 4:22 am

DaveTheLoser wrote:I had a sudden cardiac arrest while riding my bike the day after my mother whom I was a caregiver for 8 years died.

I have Ventricular tachycardia.

I got my first ICD in May of 2010.

I got my second ICD in October of 2016.

I have had about 14 to 16 shocks. I have lost track of the real total. All delivered while riding my bike.

I was able to go 4 years without a shock by taking my beta blocker consistently. That was up until the last 2 shocks. Especially the last one where I did everything and more right and still had a shock.

I have now given up an activity that I loved for 25 years due to fear of shocks.

I would rather die than face the embarrassment of receiving a shock in front of others.

I don't have any family. No brothers, sisters, parents. I have one friend in the world and sometimes I wish I could be nicer to her.

I am an only child and have spent the majority of my life alone. I met my one friend in 2011.

I am afraid a lot.

It's nice to meet everyone.

Thanks for having a spot for me here.

Dave
Dave, sorry it is a bit late but welcome.

Where are you in the world? I'm sure you will make some friends on here.
Last edited by Colin Pearson on May 4th, 2017, 4:28 am, edited 1 time in total.

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