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My heart disease begins.

May 08, 2011 - 2 comments
Tags:

ICD/PACER.

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Heart

,

Heart Disease

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MY HEART

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EP study

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stents

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Heart tissue damage

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Heart Rhythm

,

Heart Attack

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left ventricular

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Blood clots

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low ejection fraction

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Trust God

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Knowing your own body

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emotional health

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Confusing results



I had 2 attacks that went undetected by ER. First attack was severe pain behind my left shoulder blade. EKGs at ER didn't show any abnormalities, blood work seemed ok. I have a herniated disc in my neck so we thought that was causing severe nerve pain, and, after an MRI later, we thought we had located the cause of my pain down the left side of my back. We scheduled a surgery to take care of that when the second heart attack hit between the MRI and the scheduled date for the surgery. This time we knew we had pin pointed the problem so we told the ER about the MRI and the scheduled surgery so they just medicated. On the day of the surgery a routine EKG was done, at what is a better hospital, and they found an abnormal line. I was sent up to the cardiac floor and some tests were done that lead to my having an arterial gram done at 5 pm that afternoon and I was found to be 99% blocked in the "widow maker" artery. So, it was cleaned and a stent was installed. As a result, a blood clot had formed in the left ventricle and some of the left side of my heart suffered damage. I was at a 20% EF before the stent, came up to 30% after the stent and then rose to 35% EF after recovery. My last echo showed the blood clot is gone but I still have a depressed EF of 35%. I'm on all the medications most of us are on and was on Warfarin to help the clot dissolve which was successful.
Now I'm being recommended for and ICD to be implanted. Recommended is putting it lightly really. It's more like I'm being intimidated to do it. I had and EP study done which, at the first evaluation appointment the specialist said he didn't really see why I was sent, I still had good chances that my EF would rise over a year's time, it is still possible some tissue could recover, since I haven't had any signs of arrhythmia there shouldn't be a reason for an ICD but, to satisfy any concerns of risk, he thought an EP study was in order. We agreed to have the test done and was understanding that should arrhythmia be successfully induced i would receive the ICD that day while they had me in position.
On the day of the procedure I hesitated to sign the ICD permission section and opted to speak with the dr first. When he arrived he was suggesting we would be implanting the ICD which, was not how my wife and I understood things from the first appointment with him. When he discovered I hadn't signed the permission to implant he became irate. Acted as though he didn't understand why we wanted to see the test results first when he was recommending an ICD to be implanted no questions asked. At one point he came in angry and said he was cancelling everything, even the test. My wife had to talk to him in the hallway and refresh his memory concerning our first meeting and what he said then. He agreed to test without implanting at that time. According to my rehab nurses during my cardio  pulmonary exercise class, I had one of the prettiest rhythms they'd seen, even when I was pushing my heart rate upwards to 130 bpms. I was feeling confident that my heart would recover from the inductions during the EP study and for 5 times ( at least according to the short printout I was provided, I have no idea if he tried more times than that or not) at trying to induce arrhythmia, my heart recovered. Until  V fib was induced by the Dr and I was shocked back to life. That is how I awoke, my body completely levitating off the table screaming my lungs out from the pain of being defibrillated while in the cath lab conducting this horrifying test. I'm finding out now that doctors can induce any heart, even a healthy one, into V fib if they so choose. Also that my particular specialist only uses St Jude ICD and pacemaker products, which, has just paid out 16 million in fines due to an investigation by the Dept of Justice which uncovered St Jude's practice of providing kickbacks to practitioners who were being rewarded for implanting units into patients whether or not they fell within the guidelines set by the FDA qualifying them for ICD and pacemaker implants.
  At the moment I am happy I refused to go forward with the implant. I have questions, many questions. Furthermore I would like to study for myself the options that are out there concerning brands and products that are most reliable and most advanced in their technology. Not to mention that it might be possible that I'm not even a candidate who fits within the guidelines. Also that I'm not at risk of having an event in the next day or two I'm certain, and if in 5 or 10 years down the road my condition warrants an ICD, then perhaps, there may be a smaller, more advanced unit on the market that would be more comfortable and easier to extract if i should feel I want it out. I know from the research I'm doing now, they are saying it's more difficult to remove one than it is to put one in, and for the most part, there have been plenty of cases where patients have suffered complications with they're ICD units, such as, random triggering, wires coming unscrewed from the tissue, wiring actually going bad while inside their hearts. Several other records of people having infection problems and other electronic complications from their device.
  I'm having a hard time trusting the medical community right now and, I don't care what people in the healthcare community have to say about specialists and their abilities as surgeons regardless of what kind of bed side manner they have. So far I have had one cardiologist that fits my criteria for whom I want to be treating me. The first one I dropped because he had a God complex and I even had a sense that he's an atheist. This specialist who did my EP study is middle eastern showing signs of a God complex, and if he's not an atheist as well, then he is most certainly a muslim. Not that I'm racist against Muslims but I wouldn't bet he is a Christan. That's not to say I wouldn't let a middle eastern doctor perform a procedure on me if he is qualified, but I do demand that my doctor, or any associate of my doctor, be someone who will take into consideration that, I am a human being who is scared, I am concerned enough about my condition that I'm informing myself and researching, I want most of all, to get better and be well, and lastly, I don't need someone trying use fear as a tactic of intimidation to further his own career and pocket money from my insurance provider by conducting unwanted procedures or possibly receiving financial gain from prescription agencies or product kickbacks and stock shares in such products they might have investment in.              Those are my requirements and rights as a human being, and if the American medical institution can't accept that, then, we are in desperate times in this country with an overbearing horde of greedy healthcare providers who seem to care nothing about the emotional state of the patients they are treating. I feel like a number sometimes and the only things I can trust are God, my family and my own intuitions about my body.
My condition is a family history issue, I'm only 46 and I have some damaged tissue and a depressed EF but, I'm athletic, not overweight, no signs occurred before I was diagnosed to be 99% blocked, my diet was fine and is even better now, my blood pressure always reads to be excellent, I don't have extreme amounts of stress in my life, my heart rate has never given off any signals for abnormalities, my heart rhythms have always shown to be in perfect function. I have one stent installed by arterial gram, where, there are many folks who have several stents and many more who are diagnosed with arrhythmia problems that aren't being pushed to get an ICD implanted. So, why am I?            

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by jge3bl, May 14, 2011
Like I said in my comment on facebook, I applaude you for your actions.  Unfortnately there are alot of doctors out there with auterior motives nowdays.  It's sad but true.  I belive it's very important to trust the doctor that is treating you.  Not saying we need to find a doctor that tells us what we want to hear, but you already know that.  Educating yourself is the key.  I told you the story about Brian's situation and it still chills me to know how close we came to allowing a defibulator to be implanted.  I kept demanding that they explain to me how it would affect his quality of life, and they kept treating me like I was an awful father for wasting time wanting answers.  According to them it had to be done in the next 24 hours or risk losing him. It would have ended Brian's dream of working outdoors with the Forest Service and the active life-style that he loves so much. How could I as his father make a decision that would affect his quality of life so drastically without being completly sure?  I would have went along with it in a heartbeat had I known that was the only choice and the only way to save his life.  This was only a month or two after we lost Heather and the doctor knew that. I thank God everyday that he gave me the strenght to wait and get other opinions, and I just trusted in him that he would give me enought time to make the right decision.  Do I think there are doctors out there that prey on our fears in these cases?  Sadly yes I do.  But then there are Cardio Doctors like Barnard at Brookwook that I trust completely.  After hearing our story she refused to even charge us for the test she redone before she gave us her recommedations.  She concluded that of all her patients in Brian's age group he had done better than anyone she's ever encounter on the stress test and nothing on his echo that remotley show problems. Do I worry that I made a good decision?  Oh god yes. Everyday I fear getting a phone call like we got with Heather, If that happens how will I live with my decision?  I've learned to leave it in God's hands. I know he has a plan for Brian.  We get him checked every couple of years now, but everything is normal.  Yesterday we went canoeing and he lives a very active life style.  I'm not telling people to find a doctor that tells you what you want to hear, but like I said earlier, educating yourself helps you make better choices.  You will continue to be in our prayers.  Let me know if I can help in any way.  


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by heartwonderer44, May 18, 2011
I made an appointment with Dr. Barnard to evaluate the whole deal all over again. I'll be sure to count you in my prayers for telling me this story. I didn't know about Brian's full story before but I saw that Dr. Barnard is 68 years old, has been in practice for 29 years, left CVA last fall to join Cardio Consultants, anf rome what you told me today her trusted team is top notch. Her age and years in practice indicates she's treated a lot of hearts, and that tells me she will be motivated to care about me and not have any reason to progress treatments for money reasons. I know I might be told I'm in need of an implant but at least I will have made absolutely sure and hopefully will get another run of tests to satisfy her call. Thank you Jeff, you know I love you guys, we'll see her next Friday on the 27th and take it from there.

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