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

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Rosak9897
Posts: 1
Joined: May 16th, 2016, 8:02 pm

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Post by Rosak9897 » May 18th, 2016, 1:33 pm

Hi, my name is Laura. I'm 21. I am 1 week post-op of a subcutaneous defibrillator. I have dealt with ventricular tachycardia for the past 9 years. 2 Fridays ago I aborted cardiac arrest. I'm not sure what else to say, questions are welcome I will answer them to the best of my abilities. dancehearts
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Heidi Cordero
Posts: 5
Joined: May 25th, 2016, 4:38 pm

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Post by Heidi Cordero » May 25th, 2016, 8:57 pm

My name is Heidi Cordero and I live in Olney, Maryland. I am 47 years old but up until recently I felt just as I did in my 20's. I have a wonderful Venezuelan born husband and two beautiful daughters ages 16 and 14. My story begins on New Year's Eve of 2012. I had this sudden chest pain but we were hosting a party and so I ignored it. That night I had a dream that God was holding my heart in his hands. He said, "It's too big. Live life well." By the time I saw a cardiologist the pain was gone and they didn't find anything significant, other then eventually I got on medication for high blood pressure. Every year or so I would go back to the cardiologist with more symptoms that were difficult to describe, like, "My heart feels funny." I never told the doctor about the dream. During the past six months my symptoms became easier to describe... Feeling extra tired, needing naps, even at work, and then one day while I was exercising at home my heart suddenly felt like it was crazily racing and I almost passed out. In the mean time I had been diagnosed with Sleep Apnea and "Anxiety" but they didn't seriously consider a heart problem. Eventually I got an echo stress test. I decided I would run until my heart did the crazy rhythms again. Well, it worked and I nearly freaked out the tech. That day I was diagnosed with HCM - Enlargement of the heart! If only I had told them God's diagnosis 3 years earlier! I also have non-sustained Ventricular Tachycardia. A woman at work stopped me in the hall. She didn't even know my name but said she had overheard that I had a heart problem. Then she told me she had a vision that God was carrying me and that I was going to be O.K. Two days later I had an MRI and it revealed no evidence of HCM. My doctor just can't explain it. He now says maybe I have CPVT, a more rare genetic condition that can cause VT. Either way, he said I needed an ICD. I got the Medronics ICD a week ago. I don't understand all that has happened and I'm not even sure what my diagnosis is but I do know that I'm in God's care and that we all need to live life well because we just don't know what tomorrow will hold.
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Kimberlee
Posts: 7
Joined: May 29th, 2016, 12:06 pm

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Post by Kimberlee » May 30th, 2016, 6:49 pm

Hi, my name is Kim, I'm 55 and I just received my ICD last Tuesday after my EP study...boy was that an exhausting procedure!
Unfortunately while implanting my device my lung was punctured and that turned out to be a long night of enduring pain due to the fact the nurses didn't know what was wrong with me. They kept saying "the site looks good, you shouldn't be having this pain", then when the doctor came in in the morning he ordered a chest xray and seen my lung had collapsed. So the chest tube came next...oh well 1/1000 of a chance that happening they say so i guess the next 999 people will be okay :)

I've always been very active for the past 30 years as heart disease runs in my family but not due to electrical problems, due to valve and blood flow. So why this for me? Nobody knows!

Anyway I'm thankful this device will help me to have a better life. :balloons:

Now I just have to remember to keep my left arm down for six weeks...hard to do when you're a lefty! It's nice to know that not everyone who receives an ICD is as old as the couple they show on the cover of my ICD booklet from Boston Scientific.

I still not sure when I can get back to my cardio workouts and going for long hikes with my two black labs so I'll just listen to my body and go slow.

I will enjoy reading other peoples journeys and learn from them. Happy trails and I hope everyone is feeling great!

maggielilly
Posts: 39
Joined: June 9th, 2016, 6:47 am
Location: Australia

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Post by maggielilly » June 12th, 2016, 4:09 am

Hi.. I'm Maggie and I live in Melbourne Australia
I'm 60 and 2 years ago I had aggressive combined chemo and radiotherapy in the chest area. It's been a struggle to keep on keeping on and I've had numerous surgeries to correct damage from treatment and keep working full time. I recently had an echocardiogram which showed my LV ejection fraction was down to 10. I think damage from the treatment. I don't have heart disease and no evidence of heart attack.. My cardiologist is going to reassess next month and has suggested that I'll probably need a biventricular icd pacemaker and defibrillator. I've been started on meds but I'm exhausted and feel weak all the time and I think its most likely I'll have the implant.
I have many questions mainly about lifestyle. I'm hopeful the device will help me to have more energy and get back to my old self again.
Just wondering if there's anybody else in Australia or Melbourne but would appreciate any helpful advice.
One of my questions is that I catch very crowded trains in and out of the city most days where people standing very close and crammed in like sardines and everybody is on their cellphones. Is this a risk for device failure?
Many thanks.... Maggie

NewMexico
Posts: 2
Joined: June 6th, 2016, 4:23 pm

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Post by NewMexico » June 12th, 2016, 4:42 pm

Hi All,
My name is Theresa and I am having a defribulator implanted on this Thursday June 16th and I am so scared.
I have had heart problems since 2012 and was told one year ago that I needed a defribulator but never got it done due to fear.
My cardiologist now says it is not a question of if but when so I have decided to go through with it. I have two beautiful grown daughters and a husband that loves me so I have decided to go ahead. I would appreciate any responses that tell me what you have experienced.
I had a stress test last year and could not complete it and my ejection fraction was 24.
I look forward to communicating with people experiencing the same thing.

Thanks for listening!
T

Poppy
Posts: 35
Joined: July 2nd, 2016, 4:34 pm

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Post by Poppy » July 4th, 2016, 8:25 am

Hi i am Poppy from Hereford in the Uk. I had a frightening h.attack at the beginning of May. My rate was 200. I was intubated at hospital and a couple of days later stented with one stent. I was told I would need an icd and this was implanted on 11th May. I am now much better but on loads of meds including warfarin and beta blockers. The trouble is i have been told i can't drive for 6 months, although I have not had the device fire. It is a nuisance as my job entails driving. I am not earning so am having financial problems. Some folk with ices can drive after 1 month. Is this just a UK rule ? Most of you other members seem to be from the USA. Do you have different rules ?

budrock
Posts: 17
Joined: July 13th, 2016, 11:27 am

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Post by budrock » August 13th, 2016, 2:53 pm

Hi! My name is Don and I'm from Northwest Ohio. I am 62 years old and was born with a bi-cuspid aortic valve. It wasn't diagnosed until 2008 when I nearly passed out at work. I was just going to drive home but on the way home I had another episode. I decided to drive to the ER of a local hospital. The ER Doctor said I had bronchitis and was going to send me home. My family told him my heart rate was all over the place and thought I should have my heart checked out. Finally he relented and admitted me. After a bunch of tests that is when it was determined that the bi-cuspid Aortic valve was causing this.

I was put on Metoprololto control it. In 2014 I told my Cardiologist that I was really feeling tired at the time had had me go for a heart cath. There is a whole other story about that, but for now I will tell I had an aortic valve and tube replacement in June of 2014. 9 weeks later I had a pacemaker/defribiltor (ICD) by Medtronic put in. Whole other story about how it came to that point too. I will post later about those stories. I am now on 100mg of Metoprolol ER twice a day, amiodarone once a day, 5 of warfarin, lisinopril and Atorvastatin.

ChrisF
Posts: 5
Joined: August 13th, 2016, 3:55 pm
Location: Idaho Falls, ID

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Post by ChrisF » August 14th, 2016, 5:13 pm

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 it's 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 staff 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

ANT
Posts: 17
Joined: August 29th, 2016, 8:39 pm

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Post by ANT » September 6th, 2016, 7:01 am

Hi everyone, glad to have found this board. thanks for being here!

My name is Ant, short for Anthony, I am a Brit living in Hong Kong. I am a bachelor, 62 years so far on this earth. My brother, sister and their families live in the UK. We three siblings are close, but not geographically. Until 2 weeks ago I did not think that distance mattered.
On the 24th August I woke at 4pm with a pain in my top left shoulder. Gradually the pain spread across the top of my chest and included for a while the top of my right shoulder. Breathing seemed to be getting more difficult and painful. So after an hour I called the main heart hospital in Hong Kong and they suggested I come over right away. Somehow I found a taxi and 20 mins later was in the hospital. Pain increasing until they gave me pain killers. CT with contrast showed that a main artery to the heart was furred up and working at only 30%. Next morning had two stents put in. All good for about an hour into recovery......then code blue in ICU..... I had passed out with VT (250+ ppm). They got a normal rhythm back for a short time and then it went back up to 250+ ppm. They corrected it again. Thank God. Back to the theatre to check the stents. I was conscious for a few seconds wondering what the **@*! was happening. Next about a day later I came around. The VT was explained to me. But oddly the pain in my top left shoulder had also returned. The diagnosed for that was bronchitis. (It seems to me in retrospect that bronchitis was the original cause of the pain that started this series of events and the little bugs must have had a great time with my resistance low). Inflammation had also made my heart too big. Anyway a few days later I became a proud (but nervous) owner of a St. Jude's ICD. It was implanted while I was having heavy antibiotic treatment to beat the bronchitis and steroids to reduce the heart swelling. As both improved (i.e. good blood oxygen levels and normal size heart) I was discharged today. My biggest question now is what really caused the VT? Previous tests a few years back had shown no signs of arrhythmia. Thanks for listening.....I wanted to get all this 'off my chest'.....pun intended >:) Best wishes, Ant
St Jude ICD implanted 30 August 2016 after VT, following stent procedure. Prior to stent procedure on 25 August 2016 I had 70-99% stenosis in LAD at D2. At time of VT (also 25 August 2016) I had bronchitis and a large heart.

Oregonmagpie
Posts: 22
Joined: September 18th, 2016, 3:59 pm
Location: Portland, Oregon

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Post by Oregonmagpie » September 18th, 2016, 7:54 pm

Hey Folks

This is Paul. I'm a 53 year old ex-Brit lucky enough to now be from Oregon. I married my wife, Sue, 25 years ago & settled here instead of back in the UK & have spent the last 25 years with absolutely no regrets at all! Thank you all for being here & for being so generous & giving.

In July this year I had an episode of V-Tach while playing soccer. That was a close one, the paramedics shocked me out of it with two shocks from their, what felt like, industrial size cattle prod & I spent the next few days in the hospital. I received my St Judes defib a day or so after the event. After a period of recuperation & two months of feeling pretty good I decided to try soccer again, which my Doc was ok with, & received two shocks from my onboard device during the second half. This was last Wednesday & it's been harder to get over that episode than the first one. I guess this is because it doused my (possibly naive) notions that I might never get shocked & it's made my whole condition somehow more real. I also had my meds changed on Wednesday, Lopressor switched to Betapace, Betapace seems to be kicking my butt the last couple of days & I'm feeling lightheaded, can't eat, can't sleep, no appetite. I also feel like I'm awash with adrenaline, which makes me worry about setting off an episode, which produces more adrenaline. I'm currently wondering how I'll get back to doing activities & how I'll be comfortable with running & jumping and such.

Again, thanks to everyone for the strength, consideration, & incredible resilience that I've been seeing & reading on here since I found you guys yesterday.

Peace!
St Jude's Defib implanted on July 12th 2016. Emanuel Hospital Portland, OR.
2 shocks & counting.........................

tapnotes
Posts: 4
Joined: September 17th, 2016, 11:49 am

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Post by tapnotes » September 21st, 2016, 12:21 pm

Hello, my name is Patrick Stone. I am 52 years old and I was diagnosed with heart failure at age 45. I am glad to have found this group and look forward to interacting with others here.

Goingape
Posts: 2
Joined: September 24th, 2016, 12:52 pm

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Post by Goingape » October 10th, 2016, 10:10 am

My name is Chuck (goingape), 38 yrs old. I was training/sparring at the gym (Judo/Jiu Jitsu) at one point I couldn't catch my breath. It got so bad was going to pass out. Laid down on the mat and concentrated on breathing. Couldn't get the heart rate down. After 10-15 minutes called the paramedics. They said my heart rate was 260-something and my heart was in V-Tac. They carted me to the hospital and injected some medicine to try and bring my heart rate down. After 10 minutes having the medicine in me and the heart rate wouldn't come down. They had to shock me while i was awake to attempt to get the rhythm corrected. It helped and my heart rate came down. They had me in the hospital for 4 days doing all kinds of tests. No blockages and they found out that i have some scar tissue in the lower part of my heart that they think is causing my rhythm to get jacked up and cause my BPM to skyrocket when stimulated. They said I needed a defibrillator. They inserted a Boston Scientific ICD just under the skin near my ribs. Probably no more BJJ, at least for a while. A couple months ago I went to the ER the morning after almost passing out while training. They couldn't find anything wrong with anything so they sent me on my way. So a couple months later it happens again nearly killing me. Oh well, it was fun while it lasted.

Drake3287
Posts: 2
Joined: December 1st, 2016, 12:58 am
Location: California

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Post by Drake3287 » December 7th, 2016, 3:18 pm

Hi!, new member here. I'm a 58 year old male from the Bay Area that had a ICD implanted about 6 months ago. Long story short, I've been a daily jogger for the past 10 years or so running basically the same 4 or 5 mile route everyday. Almost a Ground Hog Day type of ritual jogging. Same basic run everyday so I never really paid attention to my pulse rate.

In early January of this year I was 2 miles into a 4 mile run when all of a sudden I felt like my body had been rebooted, almost computer like. At no time did I fall or lose consciousness. After a second or so I felt basically fine but decided to walk the 2 miles back to my car instead of running.

By the time I got home I felt as if I was coming down with the flu and in fact my daughter had just gotten over the flu so I assumed I was also coming down with it also. Laid around the couch and bed all day suffering typical flu like symptoms and tossed and turned all that night. At no time did I have any cardiac type symptoms. Come morning I felt so sick and weak that I told my wife to drive me to the ER.

Most of the 30 minute drive to the ER I don't remember because of being so weak. As soon as we pulled up to the ER door I told my wife I'd need a wheel chair to make it in. When the staff came out with a chair I basically collapsed into the chair and was taken directly into the ER and placed on a monitor. Within 30 seconds or so they warned me that was going to be cardioverted (shocked). Within seconds of the shock I felt 100% better. Almost as if I could just go home.

Turns out I had been in V Tac for almost 24 hours and didn't know it. At the same time it had affected my kidney function as well. Within 2 days my kidney function returned to normal and I was given a angiocath to check for any blockages. Luckily nothing was found.

I spent the following couple of months going through different cardiac tests including an MRI and was also placed on the medication Sotalol. In March I had an EP study done which found a couple of cell's that the doctor felt had caused the V Tac episode. Unfortunately they were not able to ablate it. At that point the doctor's recommended a ICD which I agreed to. 24 hours after that I was discharged with an ICD and it's all history from there.

At this point instead of my daily run I walk 4 miles and just now started to include a few 1/4 runs into it. Of course the entire time I'm running I've got my eye on the pulse rate monitor on my Apple Watch just to make sure I don't go anywhere near my trigger point!

Since the ICD I've been on several trips including a vacation to Italy and the Caribbean and haven't had any issues luckily. Doctor seems to think it's possible it may never shock me but of course I'm not kidding myself or I keep an eye on my heart rate often. At this point I lead a very normal life with no restrictions. Most people including friends and family don't even know about my situation. I've found that people you talk to automatically assume any cardiac problem was a heart attack and the rumors quickly spread to false stories. I felt it served no purpose to tell most people simply because of this.

I hope to be a regular visitor to this forum site!

Drake

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MikeI
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Post by MikeI » December 15th, 2016, 7:26 am

:big-hug:

Hello Everyone,

I am Michael. I was referred here by my wife's coworker about a year ago and finally got the energy to make the trip. I Look forward to meeting everyone.

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MikeI
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Post by MikeI » December 15th, 2016, 9:52 am

I got my Pacemaker/ICD in July of 2013 it is a Boston Medical. I have idiopathic Cardiomyopathy with Chronic A Fib. I just had my heart rebooted for the third time about a week ago. It is really nice being back in a normal Sinus Rhythm. I am enjoying my reintroduction to energy.

So essentially I am stable, and ticking along. I am medically retired from this and get to spend my time raising two amazing little girls who are bright and sweet (Most Days).

What do you all do for fun? I used to be a runner. It is what saved my life, If I hadn't have been in the cardiovascular shape I was the rapid onset of my of the heart failure should have killed me. These day I paint a little and just started taking guitar lessons. I tried low key martial arts like Aikido but the energy it required was more than I had. I also write a blog on parenting and have a forum set up for writing but Neither get much attention. Few people visit, even less contribute, so I work on it irregularly. When I started it I thought I had a lot to say but after a few rants I discovered I didn't.

I'm happy to share more but I don't really like writing to myself.

Hello Again,

Michael

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