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

Moderator: Moderators

chris

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Post by chris » March 24th, 2011, 9:35 pm

hello everyone... Im 42 and living in southern Michigan. I have a structural anomaly that I never knew about until five years ago, when I arrested. It causes lethal arrythmias that are usually controlled by medication. Ive been implanted for five years, never had a shock until recently. I am a full time Criminal Justice student, and I WILL save the world someday lol

Christina

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Post by Christina » March 25th, 2011, 5:55 pm

Hi everyone,

My name is Christina and I'm 31 years old and live in NY. I got my ICD on Feb. 24, 2011. My initial problems started when I was 22 and somehow contracted the coxsackie B virus which attacked my heart and caused myocardidtis (which is an inflammation of the heart muscle). It caused an arrhythmia and I was on medication to control my heart rate for about a year, but have otherwise been fine since, except for some lightheadedness. This past fall I fainted twice and a cardiac MRI showed a significant amount of fibrosis and scarring leftover from the inflammation which can cause a VT. I was told it's an "unusual case" and there's no way of knowing the chances of if or when it can happen, so an ICD is the best precaution that can be taken.

It's been a month so I'm starting to get used to having the device. Even though it's subpec, I have a small frame so you can still see the bump. But I look forward to my 6 weeks of "not raising my arm or lifting anything heavy" being over soon so I can get back to a normal life. I'm a pretty active person so being slightly immobile was the worst part. And trying to sleep on my back! But it's all worth it to have a back up little heart to help me out if something happens :)

I look forward to getting to know everyone!
Christina

orlifishie

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Post by orlifishie » March 26th, 2011, 3:51 pm

Evening everyone, my name is Orla and Im 34. I live in Mayo in Ireland in a small village called Cloghans. I have Hypertrophic Obstructive Cardiomyopathy and in the last couple of weeks I've been recommended by my consultant that an ICD is necessary. I have to have a cardiac MRI in a couple of weeks to see the extent of the fibrosis. My last stress test showed BP drops and Ive had events of VT on my Holter. My gradient is increasing slighty over time..currently at 2.75cm. Not sure what to do about the device....
Anyway, Im a teacher currently working with disadvantaged families and children. I love to fish and have represented Ireland on a few ocassions. I also love reading, music and animals. Some of my siblings also have HOCM as did my father but Im the only one medicated and advised for an ICD at present. I reckon my sibs probably wont need surgery at this stage as they are stable and range from 48 to 53. I would be delighted to get in touch with anyone on the board here. Ive been talking to the family and one or two close friends but they are all divided as to what I should do.
Great to find this forum...keep up the good work wavhi :::)

hotrod100

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Post by hotrod100 » March 27th, 2011, 4:25 am

Hello everyone. My name is Rod and I live in Southern California. I was diagnosed with cardiomyopathy Thanksgiving week 2007. I had my St. Jude ICD implanted on 3/22/11. Once I'm cleared by my doctor I will be going back to work.(I work full time.) I'm single and spend most of my time either on my boat ocean fishing or taking the quads out to the desert. I'm looking forward to getting to to know the people in the group here. Thanks for reading and have a great rest of the weekend!

bisoncomp

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Post by bisoncomp » March 28th, 2011, 2:58 pm

Hello
I am Mark 50 live in Albany, GA :armdown: 4 how long
Just got my icd 2weeks ago still not sure and scared about it

Duhaas

31 and counting

Post by Duhaas » April 6th, 2011, 3:52 pm

My name is Duane Haas, i'm a 31 year old male from Milwaukee, WI. I have two great kids, Isabelle is 5 and Gavin is 18 months and a beautiful wife Susie. I've been a hypotrophic Cardiomyopathy patient my whole life. I've been pretty much symptom free my whole life, with two incidents this year:

1) Crazy heart beat about a month ago, felt like my heart was going to pounce out of my chest
2) Near black out while driving

One other side note, my mom passed away last year on March 7th out of the blue @ 61, turns our she also had an enlarged out that went undiagnosed. After meeting for my yearly appt with my Cadiologist, he made the recommendation to get an ICD for the following reasons:

1) thickness of my mid-septum 26MM
2) small area of delayed enhancement that showed up on MRI

These two conditions alone he was willing just to watch over time, but after describing the other two symptoms above, hes convinced my life will be better served having this safety net. I also meet with an electro guy and he agreed with the findings. I'm currently scheduled to have the proceedure done on Friday April 8th @ 1pm. I had requested that I be fitted with the new medtronic device:

http://bit.ly/ejeFBM

I found out on monday that the device will be waiting for me come Friday. So thats where I'm @.

Goldwing Grandma

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Post by Goldwing Grandma » April 6th, 2011, 7:38 pm

Hello, my name is Cindy. I am 54 years old and had a pacemaker/defibrillator implant in March of this year. In fact my husband said it's the most expensive birthday present I will ever receive! I live in Florida/Illinois. I split my time between the two homes. I am a mother of 3 and a grandmother of 3. I was diagnosed with HCM in 1997, began active treatment in 2007. I was found to be having episodes of VT and had blacked out so my cardiologist suggested a heart cath. It was during the heart cath that we found out I have myocardial bridging. The best solution was the implant of the defibrillator. I am healing from the surgery and looking forward to resuming my active life. I am an avid motorcycle rider (Goldwing Grandma). I have been told that this implant will not impair my lifestyle. I look forward to getting to know other members of this group.

Cindy
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Juicydb

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Post by Juicydb » April 7th, 2011, 8:54 am

In December 2008, after repeated near-fainting episodes and at the insistence of my very bossy friends, I paid my first ever visit to a cardiologist who immediately sent me to the ER due to v-tach and v-fib - I was one very lucky gal. At 47, happily married for 19 years with two teenage sons, the diagnosis, the hospital stay and the ICD that I took home for Christmas were the last things I expected, but certainly not the worst. In otherwise excellent health, I needed no drugs or modifications other than the ICD, which seemed somehow to fit my nickname - Juicy. The hardest part to manage was the six-month driving restriction - which humorously coincided with my older son getting his learner's permit, allowing me to ride along in the passenger seat supervising him while he learned to drive -so much for avoiding stress! Then last summer, a day after I'd opined to a friend that I probably didn't really need the ICD afterall, I had a three-zap storm while sitting with my younger son talking at the breakfast table about his trip to the beach that day. An ambulance ride to the hospital was followed by another V-fib in the ER after saying, if I had to stay, wouldn't it be nice to get a private room (turns out the private room in the ER is a very scary place.) After they brought me back, I'm told I said to the dozen or so doctors and nurses "exciting is not the same thing as fun," which has become a motto of sorts. After a week in ICU being tested for meds - I have very, very low blood pressure and didn't do well with any of the less toxic options - I was sent home on Amiodarone again with no driving for another six months. Apart from minor side effects, I've had a good experience but am watchful given my life-long history of pneumonia. I also have Hashimoto's Thyroiditis and over the past two years, I've put on some unwanted weight. At my last round of doctor visits, I agreed with the endocrinologist and cardiologist that it was time to rev up my exercise by adding some aerobic workouts to a regimen that includes fairly labor intensive work and daily walks with my beloved Zelda, a 10-year-old black lab who is an ambassador of love from the canine world (she is truly the sweetest dog ever!) During my very first, very easy, low-impact jog, I received repeated pulses of anti-tachycardia pacing and after I figured out what was happening and returned home, one major jolt from my ICD (while bending over to put on Zelda's leash for a cool-down walk = she joined me on the floor until I was able to compose myself enough to call a friend for help.) A trip to the EP confirmed my suspicions that it was an "inappropriate therapy" (perhaps my favorite euphemism). High-amplitude T-waves were being read as separate heartbeats and so the techs gathered round the computer and tinkered with the settings. Not willing to give up on increasing the exercise, I'm in the process of signing up at our local cardio-rehab gym, where I can workout under the supervision of a cardiologist and nurse and hopefully avoid more un-needed therapies. Gladly, my driving has not been restricted again. Losing my driving privileges twice for six months within a 19-month period, forced me to close my small retail business, a custom costume shop. Fortunately, I have space in my home and have been able to continue working from home in what was always my favorite part of the business, teaching high school and middle school students how to costume their school productions. A few things I've learned - if you say maybe I didn't need this ICD and then get zapped the next day, it is after all just a really unlucky coincidence but if you say in the hospital after getting zapped, I sure hope they have a private room and then end up in ICU isolation, it is probably a good idea to stop having so much to say about your condition; and, while having the nickname Juicy doesn't guarantee that you'll eventually be wired up for zaps, it may be time to think about sticking to just plain Julia. Happy to be here and to be a part of this group, Julia

LadyF

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Post by LadyF » April 9th, 2011, 6:44 pm

Hi. I'm Fiona. Pleased to meet you all. I don't have an ICD but my husband is in hospital and they are talking about fitting him with one. Very worrying time for all of us. I'll put a thread in the relevant section about it.

oldhippie

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Post by oldhippie » April 9th, 2011, 7:35 pm

60 year old male. Spartanburg, SC
5 heart attacks since 1995. Atrial fib. 1/3rd heart mussel is dead. Bad mitral valve (inoperable), heart won't start back up.
Guidant CONTAK RENEWAL 3 Model H170 in 2005
She is going dead (battery), started beeping a couple weeks back. New one scheduled for next week.

JT Hollywood

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Post by JT Hollywood » April 9th, 2011, 9:34 pm

Hi,

I'm JT, a 59 year old real estate lawyer from LA (I live in Hancock Park, just down from the Hollywood sign). I've had my Teligen ICD for just about 24 hours now. I never had any cardiac symptoms until about 10 days ago, when I had severe shortness of breath, a bad cough and very low energy. After I played a round of golf and found that I didn't have the energy to carry my clubs back to the car, my wife made me go to my doctor. He told me I was in atrial fibrillation and immediately checked me into the hospital. An echocardiogram showed my fraction at around 15-20%, and my cardiologist says the ECG has patterns implicating my left ventricle - I guess a fairly classic case of HF. A cardioversion and IV meds (beta blockers and ACE inhibitors??) got my rythym stabilized in a couple of days and I feel much better now, though I'm not ready to run any marathons.

This is all really new and puzzling to me and I'm just starting to get some understanding about heart disease. I've considered myself in pretty good shape - playing tennis 3-4 times a week, doing yoga and occasional gym workouts. (I confess, however, that I've been a smoker for about 40 years and haven't been very good about my diet.) The suddenness with which my health has gone downhill is quite depressing and leaves me wondering if I will ever regain my quality of life.

I was very surprised to have my doctors strongly recommend an ICD, something I had never even heard about until last week. It was not a hard sell, however, after I reviewed some of the literature about VF and the "symptom" of Sudden Cardiac Death. After seeing how I could go from asymptomatic to suddenly feeling like cr*p, the ICD seems like an insurance policy that I really can't afford to pass up.

There are some pretty significant tradeoffs for this insurance, though. I'm told that I can't play tennis (my passion) or do other vigorous exercise for at least the next couple of months - until the ICD leads firm up. I'm also wondering what position the FAA will take on my pilot's medical certificate (either because of the HF or the ICD) and whether I can continue my other passion of flying airplanes. Though I hope the ICD will never have to kick in, I have considerable trepidation about what will happen if and when it does. (Though, however bad it might be, that still seems better than SCD.)

While the ICD seems like a really good idea to protect against the downside of SCD, I know that it will do nothing to help improve my cardiac health. It's simply a shield and not a "magic bullet". After just being sent home from the hospital after 5 miserable days, I am concerned that the docs may be placing too much reliance on the ICD and not enough emphasis on figuring out the causes of my HF and ways (if any) that my cardiac health can be improved or restored. Do people in this group actually get better, or just learn to live with it?

Anyway, thanks for inviting me into your family. I'm trying to stay optimistic and hope that some of your stories can help me look forward to better days.

JT

oldhippie

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Post by oldhippie » April 13th, 2011, 6:20 am

oldhippie wrote:60 year old male. Spartanburg, SC
5 heart attacks since 1995. Atrial fib. 1/3rd heart mussel is dead. Bad mitral valve (inoperable), heart won't start back up.
Guidant CONTAK RENEWAL 3 Model H170 in 2005
She is going dead (battery), started beeping a couple weeks back. New one scheduled for next week.
UPDATE: New one rescheduled for May 3rd.

User avatar
Jim and Sparky
Posts: 804
Joined: April 11th, 2011, 2:28 pm
Location: Wichita Kansas

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Post by Jim and Sparky » April 22nd, 2011, 9:57 pm

My name is Jim and my ICD is named "Sparky". We have been together here in Kansas for a couple of months now. In some ways I wish Sparky and I had never met. In other ways I am very glad he is here now. Based upon what happened to me a couple of months ago, the thought of life without Sparky is a little more frightening than life with him.

I have learned a lot after reading some of the comments and posts on this site, I am amazed about the situations some people are challenged with. It almost makes my own situation seem somewhat small and insignificant, comparatively. Yet I feel a very close bond and am drawn to the similar experiences we have had together. It is just that I never in my life imagined that I would be sharing this with you.

At age 54 I admit that I have not always taken the best care of myself. I smoked for many years. I was somewhat overweight, but not really obese. I have had high cholesterol and blood pressure issues off and on and have taken medications at times. I don't get as much exercise as I could.

But I never really abused myself and in the last 2 years, I had quit smoking, had lost almost 30 lbs of weight, improved my diet and lowered my cholesterol and blood pressure risks. Things were looking up and I felt good.

Then in late January I experienced a rather classic myocardial infarction. It happened on a Friday morning. By noon that day I had a stent placed in the left anterior descending artery and two days later was back at home. A week after that I was back to work part time and recovery seemed natural, normal and quick.

But then, two weeks after the MI, I suffered two separate fibrillation episodes (SCA's), one at home, the other about 30 hours later while still in the hospital. My wife (my hero) and others had to perform CPR on me and paddles were used to jump start me and revive my heart to a normal rhythm. These 2 events were particularly wicked in retrospect even though I have no memory of them. Isn't it a bit spooky to find out what happened later? I'm still trying to figure it all out.

I was very near death and I know I am very lucky to be writing this today. After the second SCA, the powers that be decided I should meet Sparky and he was placed just under my left collar bone. He has been quietly residing there ever since. He has never gone off in 2 months. I hope he never does.

The doctors tell me that I am doing very well even though, to me, the recovery process has been agonizingly slow at times. I recently had a treadmill stress test and surprised not only the doctors, but myself, as to how well I did.

I am an accountant and I am back to work only part time. I started off with a couple of hours a day and now, after two months, I am only able to manage 5 or 6 hours. I do have to admit that each day I seem to be a little stronger than the day before and that is encouraging.

A friend told me that the reason I was still here was that maybe I wasn't done with something yet in my life. I must admit that some aspects of life have taken on new significance. Somehow the sounds of birds in the back yard, the smell of a soft springtime breeze, the touch of a warm and loving hand and the kindness and support of family and friends is a lot more important than the April 15 deadline or how much money is in the bank.

So that's Sparky and me. We plan to be around to gently and lovingly harass people for a long time to come.

Jim
MI 1/21/11; SCA's 2/3/11 and 2/4/11
I have a Boston Scientific Teligen ICD and a Boston Scientific Promus stent,
I guess my cardiologist is sort of a BS kind of guy.

Two rules to live by:
1) Don't sweat the small stuff!
2) It's all small stuff!


My Intro is on this page: http://www.icdsupportgroup.org/board/vi ... 917#p74917

taicw

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Post by taicw » April 23rd, 2011, 1:02 am

Hi Everyone! Hope everyone's doing great.
I'm Tai and I'm from Singapore, 36 years.

Just found out that I had Brugada in Feb this year when I fainted during a routine health screening while drawing blood. Was sent to A&E where the docs happened to see my ECG being abnormal, they warded me and got an EP to review me, got sent for a flecanide challenge which came back positive and well my life sorta changed then.

Didn't manage to have much peace of mind during the next 2 months while I tried to come to terms with and read up more on Brugada & ICDs (my EP recommended having an ICD implanted) (never got hospitalised before and was perfectly healthy and doing all sorts of sports)
Finally decided to go for the ICD as I couldn't live with the knowledge of the risk/possibility of leaving my wife and soon to be born kid alone in this world. Had my ICD operation on 1st April, recovering now as I type this (haematoma & bruising & chest/neck/arm aches for the past 3 weeks).

Just wanted to say that this board has been a great source of help, support and information when I was trying to find out more about ICDs, what's it like to live with an ICD in me etc.

Looking forward to getting to know the folks here and wishing everyone happiness & health.

wavhi
------
Tai
Brugada/Medtronics Maximo II VR

User avatar
TJKilborn
Posts: 2
Joined: April 18th, 2011, 2:29 am
Location: Tukwila, WA
Contact:

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Post by TJKilborn » April 23rd, 2011, 3:42 am

I'm just going to keep this short, sweet, and to the point!

I got a S-ICD (subcutaneous-implantable cardioverter defibrillator) implanted on Thursday, April 14th. I'm so excited! What they originally thought was A-fib is actually Ventricular Tachycardia. That means I'm at a very high risk for sudden cardiac arrest (heart attack).

I am a 27 year old woman.

I have an enlarged heart (a little more than twice the normal heart size), CHD, and have had so far:

  • 11 Open-heart surgeries
    14 Electrocardioversions (defib shocks to get heart back into normal rhythm...was in the high100's to low-mid 200's heart rate)
    12 Cardiocatheter procedures
    1 Failed Cardiac Ablation
    Numerous other heart-related procedures

I'm still not "FIXED" (never will be), numerous future operations/procedures will be due as medical technologies allow...
AND I'M ONLY 27!!!

Averaged, that's approximately 1.45 heart-related procedures EVERY YEAR THAT I'VE LIVED.

BUT I'M STILL HERE!!!

Despite all that I've been through, I've found myself telling others that "I'm the most optimistic, positive person I know!"

I have never found myself wishing that I didn't have to go through it all. It has been with me my entire life and will continue to be. If I didn't have these issues, then I wouldn't be the person I am today! I wouldn't change ANYTHING that has happened. Keep your chin up, ladies! Hope, determination, and love for everyone & everything are the keys to living the life and finding the cure!

I'm still here!
~Tara
dancehearts
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There is something beautiful about all scars of whatever nature. A scar means the hurt is over, the wound is closed and healed, done with.
Well... Except for me, anyway...
:)

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