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

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Post by morrissm00 » February 28th, 2016, 2:04 pm

Hi my name is Sheila and I am 37 years old, mother of a 3 and 5 year old boys, an engineer and a Navy veteran. I went into sustained VT in November while on a run. Luckily for me an RN pulled over and had the good sense to get me to the ER. Once there I was given an EKG and my heart rate was 260. They stopped my heart and I immediately felt better. After a month of tests and wrong diagnosis I changed my EP cardiologist. I had an EP study done and had an ICD placed on 4 FEB. I have been diagnosed with VT in both my right and left ventricles. The DR was able to do an ablation for the RVOT but not my left ventricle. I was placed on Sotalol 40mg. I cut my pill in half. I have low blood pressure before all this happened. I was taken of the meds because I had wide QT but then I had multiple episodes of left VT. Now I am back on it and my EKGs have been fine. I have no underlying heart conditions, no genetic arrhythmia, just a heart that likes to produce " rouge cells" as my DR put it. I am considered high risk for SCD hence the ICD. I am still trying to wrap my mind around having VT with no known cause. Oh and of course having an emergency room in my chest ;)
Diagnosed with Left VT and RVOT
ICD: Feb 4, 2016

Theme song: "The Rhythm is Gonna Get You"

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Joined: February 28th, 2016, 4:13 pm

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Post by Trish » February 28th, 2016, 5:14 pm

Hi! My name is Trish and I'm 58. I was diagnosed with severe nonischemic cardiomyopathy with LBBB in July 2015. My EF at diagnosis was 7-10%. I started the usual meds and by the end of October 2015, my EF was up to 20-25%. My biventricular ICD was implanted November 2015. My cardiologist thinks mine is probably hereditary...my dad died of a heart attack at age 47.

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Joined: March 4th, 2016, 9:16 am

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Post by roomago222 » March 4th, 2016, 12:47 pm

Hello everyone!
My name is Rachel! I am 27 years old!! I love all animals and love to rescue them and encourage others to do the same! :)
I was born with an AV intermittent heart blockage in the second degree. I started getting dizzy and lightheaded while in 9th grade. I have always had nasty chest pains my whole life. But once my symptoms got bad enough I almost started passing out multiple times a day I decided to go see en electropysiologist. Well, I found out that I had a complete block now. My heart rate for the past 4 years or so never went above 38. Average was 30 bom. In August 2015 i got my Medtronic pacemaker with dual leads (no defibrillator).
Now I seem to be worst off then I was before! Hoping to get it figured out and get on with my life!!!!
Much love to you all! Really looking forward to this forum!!! :)
Love, peace, & Happiness!

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Post by Cynthiao94 » March 10th, 2016, 2:55 am

Hello Everyone!

My name is Cynthia, and I am a current Biomedical Engineering student at San Jose State University, California. Although I do not have an ICD, I have always been interested in ICDs and pacemakers, and am always on the lookout for upcoming devices that seek to improve an ICD patient's quality of life.

On another note, I was hoping the ICD support community could help me out! I am current doing an assignment for my Clinical Trials in Biomedical Engineering course on ICDs. For the assignment, I need to interview (either phone or skype) 2-3 patients who have been implanted with ICDs. I am interested in learning about how the device affects your quality of life, common issues and pains, etc. The interview will take no longer than 15 minutes of your time.

The deadline for the assignment is March 18th, 2016. If you are interested in being interviewed, you can reply back to this post or message me.

Thank you for your time.
Cynthia O.

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Joined: March 10th, 2016, 11:33 am

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Post by sunnysand1956 » March 12th, 2016, 2:28 pm

Good Afternoon to All - this seems the likely place to start, at the beginning............
My name is Lorree L Pursel, and I currently live in Amherstburg ON. I (reluctantly) celebrated my 60th BD one week ago - it came around quickly!!!!!!!!
During the Summer of 2010 I noticed occasional and very brief instances of S of B - no biggie, figured it was allergies or hay fever or sinusitis whatever.........
By late Summer end of August I was unable to climb stairs and exertion was becoming ever more problematic. Many Dr's visits and several specialists later I was hospitalized finally in Oct 2010 w CHF and was very ill indeed - and so the REAL Journey began. Over the past 5 1/2 yrs I have been cardioverted 8 times, hospitalised some 23 times - no. 24 coming up March 24 - had 3 catheter ablations, a couple of angiograms - one thru the wrist which freaked me out big time! - been prescribed several rather toxic medications ( can't tolerate Amiodarone or Metoprolol ) and finally rec'd an ICD on Feb. 4th 2016. It is a dual (my word) P/M and Defibrillator in one, and the nxt app't is to knock out my electrical system and activate the ICD which will control my heart completely - it feels a bit scary but since my heart will NOT remain in normal sinus rhythm for reasons unknown to any Dr I have seen, and I am literally disabled when in A-Fib, this is the last resort. Ssssooooo not where I had planned on being at 6o, ya know????!!!!!!!!!!!
I believe I've handled all of this nonsense quite well - fake it til ya make it - though Family and Friends want the "old me" back - BLESS them, they don't realise I've pretty much said ADIOS to Her - the only direction is really forward - so we shall see.............
I am sick and tired of being sick and tired - harsh words and not very gracious of me during a simple intro, but authentic none the less. With an EF of less than 30 for the past 2 yrs and S of B constantly, it has made any activity let alone exercise very challenging - and so I endeavor to do what I can where I am w what I have.
Like everyone on the planet, there are Good days and not so Good days - so I don't expect a miracle but I am open to one just the same!!!!!!!!!!! I would gladly and gratefully settle for some improvement - and the nxt few weeks should tell that story...........Sincerely, Lorree xoxo

Stella Blue
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Post by Stella Blue » March 30th, 2016, 8:05 pm


I think I need to start with the confession that I am a long-time lurker on this site. I was first diagnosed with ideopathic cardiomyopathy back in December 2011 and received a CRT-D in January 2012. At the time, I was very worried about both my ability to keep on working and also concerned that my position would be at risk if people at work understood my situation. So, I read everything but didn't have the nerve to sign up. Now, I'm in the process of changing jobs and, with a couple of days between firms, introducing myself to all of you at the top of my "to do" list (along with, but ahead of, cleaning out my closet).

The thing is, I really owe the members of this group a tremendous debt. I am a Jersey Girl like Maureen, but I have been living in Japan for the past 25 years, so I've had to deal with my illness in a very different environment. Just having passed my fourth anniversary with my device, I've been very fortunate, as my EF has gone from 10 to 50, my heart has returned to normal size, and I'm still working. But without the information I gained on this site, including most importantly about the need to be my own advocate, that would never have happened.

My story started like many - I was feeling tired walking up hills and taking more naps than usual, but I chalked it off to age (I was 57 at the time) and lack of fitness. Just before Christmas, I woke up from a nap and realized I was wheezing. I self-diagnosed myself with walking pneumonia and set off the next day to see a doctor I had consulted with on allergies (historically, I was not a big consumer of medical services so didn't have a regular doctor), thinking I would get some antibiotics and that would be the end of it. I owe a lot to this particular doctor as well, as he listened to my story and then recommended we do a chest x-ray just to be on the safe side. The x-ray, of course, showed that my heart was very enlarged. The next day, I went to a larger hospital, still not really expecting any big problem, but after they did some tests including an echo, they told me I needed to be hospitalized immediately. They wouldn't even let me go home for an hour to finish my Christmas wrapping without signing a waiver stating it was not their fault if I dropped dead along the way. I did manage to get home and slap some stickies on my pile of gifts for the kids (who were then 9 and 11), but by that point I was really terrified.

The first hospital I was admitted to was a big general-care institution. Looking back with the benefit of some knowledge, I can see that they did everything right for someone in my situation, meaning they got the fluid off and monitored and kept me going in the meantime. The doctor figured out on day 1 that I was probably a candidate for a CRT-D, so I think he was competent, but he was also a disaster from a bedside manner perspective. He kept telling everyone in earshot that I was probably going to die, and he kept suggesting to me that I might be happier dealing with my illness back in my own country. It was incredibly unnerving, but luckily, my husband has a few doctors in his family, and after the first week, I was referred to a very good doctor at a specialized cardiac hospital and moved over there.

In Japan, the EP/Cardiologist distinction doesn't really exist, there are just heart doctors. But, even though my doctor is not an EP per se, I think he has been more of a device guy more than a medication guy. It was the younger doctor on the team who sat me down one day and explained to me that, even if the CRT-D worked, there wouldn't be any real possibility of reverse remodeling without medication. So, having nothing to do in the hospital except fool around on my laptop, I started looking into things. I found this group, as well as some others, and I started talking with my doctor. My initial prescription was for a very tiny amount of carvedilol (charmingly marketed as "Artist" in Japan), an equally tiny amount of the ARB candesartan (less charmingly marketed here as "Blopress") and 20 mg. of Lasix (mysteriously marketed as "Lasix").

Once I discovered the AHA heart failure guidelines, I started talking with my doctor about raising my dosages and trying to get to the U.S. targets. He was initially very dismissive, saying that the guidelines just reflected the fact the studies were funded by U.S. drug companies. I learned that the highest dosage of carvidolol in Japan is just 20 mg a day, less than half the U.S. target dosage, because that is the highest dosage covered by the Japanese national health insurance. So the dosages I was talking about based on the guidelines sounded completely outrageous. And then I experienced a single appropriate shock about one year after the implantation, a few months after he had agreed to an initial increase, and that also made him nervous. But armed with all of your advice regarding self-advocacy, I kept talking, and gradually my dosages kept going up. My doctor progressed from his argument about drug company funding to an argument that the people who could handle such high doses were already strong so didn't really need them, but it also became clear that he was becoming curious and I was becoming a kind of human guinea pig for him. It took more than two years, but I did eventually get up to 50 mg a day of carvedilol, although I am still at only 16 mg. of candesartan. I have been lucky and have not had any serious problems with the carvedilol. Also fortunately, I have U.S. expat health insurance so I am not bound by the Japanese dosage limits.

I have to explain that, in Japan, doctors are DOCTORS and typically demand and receive deference from their patients. But my doctor, even though he is very senior and renowned in his field, didn't do that and was willing to engage in this dialogue with me, although I have also been careful not to push too hard too soon. For example, I've never asked him why didn't try an ACE inhibitor before prescribing an ARB and I've not pushed for a higher dose of the ARB just to get to the target. He actually never did a follow up echo until last year, three years after the implantation. But then, when it showed that my EF was up above 50 and everything else was in normal range, he had an epiphany that high doses of beta blockers might actually work. It seems that historically there has been zero expectation in Japan that a patient in my original condition could experience this type of improvement. So now, he is trying higher dosages with other patients as well, although the Japanese health insurance limits make it difficult and he sometimes has to combine different beta blockers to get around that. He's also speaking with other doctors in the hospital and the industry about his experience. So, at this point, you have made a difference not only in my life, but probably in the lives of other patients in Japan as well.

Sorry, this is becoming very long, but it seemed I needed to tell the whole long story to make it clear why I am so grateful to this board. I should also say that, apart from all the good advice, I have had tremendous enjoyment reading your posts - it's a remarkable group. Never thought I'd find a message board for people with ICDs and come away thinking "these guys would be a lot of fun at a party!" Now that I've joined, I hope that I'll be able to make some contribution, and it is great to know that, if and when I do have problems, I can always turn here for advice.

Best regards, Stella Blue

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Post by researcher09 » April 7th, 2016, 8:44 pm

My name is Rei and I am here for my father in law. He is in heart failure right now after 2 recent heart attacks and I am helping him research his options after he asked about the possibility of a heart transplant. I have looked in many places and there is a lack of patient centered support groups like those available for more common conditions such as AF. My father in law has AF too and that is complicating things for him right now. I am very familiar with AF too for that reason and belong to the lone AF forum as well. Anyway, I am here to research choices, mainly ablation and want to see what others have experienced. I will be happy to share my research on the topic. I am a retired research scientist that continues researching.

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Post by rogue2ironman » April 8th, 2016, 5:03 pm

Hi all,

My name is Cory and I'm 27. A week before my birthday this year and after about 2 months of different doctor visits, I found out I was diagnosed with HCM... Needless to say it was the LAST thing I was expecting when I first walked into the walk-in clinic hoping they would tell me that I was just out of shape and healthy enough to work out (the whole reason I went there anyways was because I wanted to get back in the gym after nearly a year of not going.. and I was having heart pain and fainted a couple times.. so I figured I might as well just check in with the docs to make sure it was all fine). I was embarrassed to run, or bike, or even hike with my friends because I had to stop so often from the pain.. They'd all just kinda laugh and tell me I was out of shape but I felt like I might have a heart attack.

With my EP, Cardiologist, General doc, and my cardiomyopathy specialist doctor all in agreement that I needed the ICD.. I had the surgery last week. I'm just finding myself SO frustrated and angry with it all. I'm tired of being tired.. I've been an athlete my whole life.. walking up the stairs to get to work shouldn't leave me so short of breath I have to stop in the bathroom so no one sees and put my hands on my knees.. not to mention the sharp pain from my outflow obstruction.

I'm not really sure why I turned to this website to be honest.. guess i just thought that it's nice to know so many others feel what I feel every single day. I've always been a really happy soul and the past couple months I've found that I don't feel happy anymore.. I'm frustrated with my heart and now I'm questioning my decision to get the ICD.. I hate it so much right now but I tell everyone I'm fine.

Am I going to feel this thing inside of me forever? Does anyone else's heart kind of hurt from where the two lead wires are?

It's been comforting reading your stories..


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Post by Charon101 » April 11th, 2016, 2:57 pm

My name is Kevin, I'm 41 years old, a husband to an amazing woman and a father to a wonderful 7-year old boy. On New Years Eve of 2014 I was diagnosed with non-ischemic cardiomyopathy and systolic congestive heart failure. My EF when admitted to the hospital was 10%, it's now up to 42% - I'm on the usual suspects of drugs: Metoprolol, Lisinoprol, Furoximide, and Spironolactone. In March of 2015 I had my Medtronic ICD implanted and life was moving along pretty good until....

One week ago from today I got my first "Jesus Jolt" (by the way, that's a fantastic name for it!). I actually got 6 jolts in the span of 5 minutes - these came completely out of left field. No warnings, no discomfort, no chest pains, nothing - I was literally 5 minutes from walking out of my front door, getting in my car and heading off to work just like any other Monday. Apparently what happened was my heart went into a-fib which then caused tachycardia and my little device went, "Hmmm, this doesn't look right, let's zap him." Spent two days in the hospital under observation - heart rhythm normal the entire time with the exception of the occasional a-fib burst which were so small that they were considered insignificant. Stayed out of work for a week, am back to work (I'm a school administrator) with the only restriction being that I can't drive for 2 weeks. After 2 weeks, I'm going to undergo a stress test and they'll see whether or not everything looks good.

To be honest, after the initial diagnosis of CHF and getting my ICD implanted, I felt fine both psychologically and physically. As I mentioned above, life was was moving along pretty good and I fully expected to live a full life with minimal complications. Since last week though, I've found myself incredibly worried, anxious, nervous, and not wanting to do anything that might remotely drive up my heartbeat. I know that it's still early in the game and that I'm still dealing with the psychological trauma, but it's been a tough week. I worry constantly now about my wife and son and I often feel this incredible sense of loneliness. I have some fantastic family and friends, all of whom have been supportive and understanding, but they will never understand what it's like to get the "Jesus Jolt" and the sheer feeling of terror and "Is this it? Is this how I'm supposed to go greet St. Peter?" I'm not quite ready to meet Charon and cross the River Styx....

Luckily I found this website through a Google search and reading some of the stories and comments on here have definitely made me feel like I'm not alone in dealing with this. I look forward to being a part of this group and contributing to it in any small way I can. Thank you for letting me join.

-December 31, 2014: Diagnosed with non-Ischemic Cardiomyopathy and Systolic Congestive Heart Failure
-March 23, 2015: Medtronic ICD Implanted
-April 4, 2016: Baptism of Fire - received 6 Jesus Jolts in 5 minutes

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Post by natashal » April 11th, 2016, 3:18 pm

My name is Natasha, 40 years old.

Avid athlete, undiagnosed, scar on right ventricle caused sustained vtach when out for a longer run - heart rate 260, saw spots and was out - thankfully another runner saw me and called an ambulance where they captured the tachycardia. Fainted during another run of 8 miles, on the treadmill a few weeks earlier. All earlier 2014 (March and April). After a slew of every test imagineable, undiagnosed. I was misdiagnosed first by a doctor here (ARVD) in NH, but through my own research reached out to specialists in Arizona and Boston who since retracted my original diagnosis!! A patient needs to do alot of work in order to get the correct diagnosis. Docs believe myocarditis which may have left scar or just inflamed ventricle - could have healed but we will never know!! We will never know since the initial MRI done was terrible and should have tested for myocarditis but did not. So I will never know with certainty. I got the ICD for safety precautions so I could return to activity with peace of mind that if this does occur again, I am protected.

I returned to running at a much slower pace because of the Sotalol I was on. It made my life miserable and as an active individual I could not see myself feeling like I was 90 years old (as I felt on the Sotalol). So I began pushing my doctors for an ablation. My previous doctor said "no", so I sought out the very best of the best at Brigham in Boston.

I Just had a successful ablation March 15, 2016. The doctor was able to induce the VT in the EP Lab and than ablate it. They were not able to induce it after the ablation. So it was very successful. Doctor had to go inside and outside of my heart. I have 6 weeks of recovery, that is no intense exercise other than walking, which I am doing now about 3-4 miles briskly a day. This is to allow my heart to heal. I was taken off the Sotalol which made me feel terrible and during the 6 week recovery period I am on 20 mg of Nadalol - a less intense beta blocker at a smaller dose. At the 6 week point, I will have a stress test without the Nadalol and if successful, I can begin to run again and possibly come off all meds - which at this point is only the Nadalol. However, it will be scary. The medication is a kind of protection against the ICD firing. So even if I have to stay on a teeny dose of beta blocker, that would be ok with me.

I am looking forward to running again! Cannot wait. It will be scary if I can come off the meds, as I do not want a shock. But the doctor said it was a success so I heed his advice.

It is refreshing to know there are others out there.

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Post by Lexy82 » April 17th, 2016, 6:40 pm

Hi everyone, I'm Alex, a 33 yr old female that has a medtronic pacemaker/defibrillator implanted June 20, 2014. Recently, Thursday April 14th my defibrillator shocked me twice in 6 minutes. It was the first time I was shocked and honestly, i'm scared to death now. I have surgery tomorrow morning (April 18, 2016) on my heart. I'm fighting to stay off the transplant list. And things can be extremely frustrating at times when even my doctors, and the doctors they send me to and the doctors at mayo all say, well, "shes out in left field by herself with this one" meaning i'm not the typical heart patient. I feel alone. Especially now that i've been shocked, no one seems to understand the anxiety I have. yes it saved my life. yes im extremely grateful. that aside i'm scared to freaking death.

~September 2004 Heart Failure
~April 2013-2014 8 ablations, one stelliate ganglion nerve block, 1 thorocatomy
~June 20, 2014 Pacemaker / Defibrillator Implated
~April 14, 2016 Received my first 2 shocks.
~April 18, 2016 Open Heart Surgery at Houston Medical Center

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Post by lsc2012 » April 21st, 2016, 6:45 am

Hi, my name is Sharon and I live in Australia. My aim is to learn more about cardiac devices - the lived perspective. A summary of me - I am an academic but I am thinking about early retirement. I have had some heart failure since i was diagnosed with cardiomyopathy in august 2012 when I had just turned 52. Like a lot of people who get DCM my heart stretched causing AF. It was a shock though (small pun alert), as it was about 4 months after beginning medication for the DCM. At the time the cardiologist suggested I get used to the AF and it would not cause me trouble.

18 months later I had had enough of the AF and the cardiologist. I was slowly getting worse and was convinced that AF was making life more difficult. Bundle block developed till it seemed the different sides of my heart were 'doing their own thing'. I found an EP and had an ablation in May 2014. It has held mostly since then. I found a new cardiologist and had a crt-d implanted in January this year.

I try to read everything I can about my device and the medtronic technician said it is pacing at 98% with boundaries of 50 to 130 - I don't understand the pacing bit. I had hoped to feel a lot better by now but last echo was back below 30% and it is a struggle to feel well more often now. Still, I am not making any judgements on this till it has been 12 months. I am not worried about shocks as it was always about the resynching not the defib.

I have had 2 episodes of AF and flutter this year and i try to wait them out and see if they will revert without medical intervention but the rate knocks my heart around a lot now and I feel horrible for 2 weeks after these episodes. I wish the device could stop AF as well.

I hope that is not a depressing story. I wish there was more help out in my community but I had no followup or info following the device.

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Post by DHolt » April 27th, 2016, 4:30 pm

Hi! My name is Diane and I received a defibrillator 2 weeks ago. April 13,2016. My story probably dates back to Aug. 24, 2010 but we aren't positive about that. On that date, I got to work 1 morning and was sitting at my desk and a co worker came to visit. She was standing there talking to me and I started spilling my glass of water on her foot. She realized that I had passed out and wasn't breathing. Between her and some other wonderful co workers they called 911 and proceeded to do CPR. I am unsure how long I was out but demonstrated some seizure like symptoms as well. I had know prior heart issues, no history of heart issues in the family and had been feeling fine. I had not slept well the night before but that was it. I was taken by ambulance to the hospital and the Dr.'s knew right away my electrical system was out of whack but what caused it the brain or the heart as both my EKG and my EEG were abnormal. Nothing new was happening and after a few days in the hospital I went home on beta blocker and seizure meds. I was referred to Mayo Clinic where I saw a specialist in Long QT syndrome. I didn't really fit the parameters of that based on my 1st episode happening in my mid 40's but we did tests, holter monitors etc. I also continued with my neurologist. After a couple of years of no abnormal heart activity and of trying to make it go it was decided that it was the brain that triggered the heart. Weaned off of the beta blocker and continued to take the seizure meds and meet annually with the neurologist. All was great!
Fast forward to April 8, 2016. I was quite tired at work that day, but we had been extra busy. My father in law had surgery on April 1st and each night after work we were going to the hospital. On Friday, I ran some errands for my mother in law after work as well. When I got home that evening I told my husband, Norm that I was going to bed early. Our son is currently living with us and when Jordan went to go to his night shift job at 9:30 I told him not to be surprised if I was still in bed when he got home in the morning. (he usually makes fun of me because I am up so early on my day off). Went to bed. The next morning my husband left for work about 5:15 am and I heard him leave, but I didn't really remember him saying good bye as he always does. Well over an hour later, I heard my son come home. Shortly thereafter I woke up feeling terrible. I was nauseous and felt very light headed. I thought maybe I was getting the flu. I decided to try and sit up on the edge of the bed to see if that helped. I don't know if I did or not. The next thing I knew, I was waking up on the floor after having passed out. My son heard the fall from the basement and came running upstairs but I was already standing by the time he got there. He helped me to the couch and got me some water. A few minutes later I was out again. He thought for about 20-30 seconds. (long enough for him to grab the phone to get ready to call 911) This time when I woke up I felt a little better and told him to take me to the ER. I thought I was having the seizures from 2010 again.
We went to the ER and all looked good. Monitor was not doing anything funky, even though I passed out once at the hospital. Did a CT scan and talked to the neurologist. Decided to increase my dosage of meds and gave me another med to take then and again if it happened again. (in the mean time, my husband called while on his break at work because he said I was acting weird that morning and he assumed I was having a dream) I told him they were sending me home so to stay at work. Since my son needed to sleep for work, my daughter Sam and son in law Brent came an hung out with me for the afternoon. I didn't do much and felt better. They left when my husband got home. We ate a light meal and though I didn't feel great, I felt ok. Then at 8:20 I went out again. So, I took my regular meds and the new med they gave me. I actually packed a bag because I told Norm if it happened again we would go back to the ER.
About 11:30 that night I was making noises and Norm couldn't wake me. He called 911 and I woke up before the 1st responders arrived. I really have no memory of that or of the majority of the ambulance ride to the hospital. It is about 15 miles. Got to the ER and they hooked me up again. I believe I passed out a few times but again nothing is registering on the monitor until it did!!!! They had decided to admit me and they the monitor started to go crazy. They decided immediately that I needed to go to the Heart Hospital affiliated with our hospital. I was passing out quite frequently then. I was taken by ambulance to the Heart Hospital and things went down hill fast. Was out more than not and they had to use the paddles on me. (the first IV med the tried didn't work and actually made things worse) The next one stopped the episodes almost immediately but I had experience V Fib/V tach. Oh Yea! By now it was Sunday, April 10th. My 51st birthday!!! They were able to get me stable and keep me that way on Sunday. On Monday I had an angiogram and all looked good there so we decided on Wed. to implant the ICD. All went well, but I am nervous and worried about it going off, or will it be another 5+ years before it goes crazy again. We are still dealing with the neurologist and the Dr. at Mayo Clinic has been consulted again. I am back to work now and trying to go on as normal as I can, but I am pretty nervous!
Sorry this got so long!

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

Post by Bets » April 28th, 2016, 9:55 pm

Hello all. My name is Betsy. I currently live in the mountains of NE Tennessee. I came here from South Florida. I am married with three lovely daughters who tell me there will be no grandchildren. That is their choice and I have no problems with the decision. In late 2004 I began feeling rather punkish. I was sure it was just a bad cold and that I could shake it off. After two months I figured it was not just a cold, but hey, I was only 48 at that time so it could not be something too bad. My coworkers drove me home from the office one day when I nearly collasped there. My husband finally had enough of me and just picked me up from where I was trying to stand. He poured me into the car and headed to our GP's office. The whole trip I complained that I was just fine, only tired. My GP sent me immediately to the local hospital where I stayed a few days. He was pretty sure I would only live a couple more days. They sent me to a more progressive hospital by ambulance telling me that I was in bad shape. I guess a 10-12 EF was a good clue. I had idiopathic cardiomyopathy and CHF. I had my cath done and was awaken by the doctor insisting that I stop singing along to the song that was playing in the cath lab when I went to sleep. Roxanne is such a catchy tune! He informed me that I was in need of a new heart. Well, I was quite fond of the one I had and did not want to get a new one. The doctor was a good friend of the head of cardiology at Mayo Clinic in Jacksonville which was my next hospital destination. Mayo is a wonderful place with great doctors. My transplant cardiologist is a master of better living through chemicals. He was determined to work with me to beat the problem without a transplant. Here I am 11 years later and feeling quite satisfied with my original heart. While at Mayo I was given a Medtronic Concerto II CRT D. Unfortunately I was fitted with the Fidelis lead but have not had a fracture. My EF is currently 31 but I feel as if it was at least double that. I am able to run my gardens and can my produce. I spend a lot of time doing volunteer work with children and teenagers. (Making up for no grandchildren I guess). I used to post at a forum that shut down and never looked for another until my alarm sounded this morning. It was expected as I need the battery replaced again so I am not too worried. I just wanted to see what others are saying these days about their experiences.

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

Post by luvmydogs » May 2nd, 2016, 9:35 am

Hi All,

I am Joanne and I live in Vicksburg, Michigan with my husband and 3 dogs. I have one 23 year-old son who lives about 2 miles away and is getting married in October. I do not have my ICD yet- I am meeting with a doctor to discuss the ICD options. I am 45 years old and now have congestive heart failure. I am a fairly healthy, active person, and the doctors believe the heart failure is from the chemotherapy I received 23 years ago when I had lymphoma and had a bone marrow transplant. They now know that one of the drugs I received lists organ failure as a long term side effect.

When the heart failure symptoms really started, I actually thought my breathing problems were from allergies (I am allergic to dogs, feathers and mushrooms). I love mushrooms, take care of 6 dogs, and raise pheasants! But after having to go to the emergency room for not being able to breathe, my doctor figured it out and referred me to a cardiac specialist.

I don't feel bad other than being tired and lacking energy. I am not sure the ICD is the best thing at this point. I'm not sure why I am apprehensive, because my body has already been through a lot, but I am having a harder time with this decision.

I will be posting some questions once I figure this all out. It's nice to see on here that there are a lot of people in my age range. Thanks for listening.

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Joanne (aka Jo)

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