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Having Doubts

Jun 07, 2011 - 1 comments

I can't do it!! I have so much anxiety over this procedure as it nears and I'm seeing all sorts of cases where people are getting phantom shocks or unjustified shocking and so many cases of lead fracture and lead leaking. It's scaring me more and more and I've come to the conclusion that I will be bitter with this thing in me. Every time I think of calling it off I get a warm feeling that it's the right thing for me to do at the moment. I just don't think it's for me right now. So much praying and pleading to God for his guidance on the matter has left me believing I can live without an ICD, at least for a while, hopefully a long while. I am one of those people who just hasn't been convinced I really need it and I know for a fact I will hate it and become a monster over it. There's not a single thing about it that comforts me and I am being told it is a grey area for me. No proof positive I need it, just a safety precaution. So, do I live with the idea that I have been coerced into getting this thing and hate every minute of it in fear that I'm going to be shocked or suffer misplacement of leads or fracturing/leaking or programming problems,or, do I live my life the way I know it now, demand echo grams to keep a watchful eye on my heart or at least prove to me there's no alternative but an ICD so I can get comfortable with the idea. What if my heart gets stronger without it and they are proven wrong in the long run, that I'm not in so much danger of sudden death. How much more would I regret letting them put an ICD in me then. What if God really did heal my heart (as I prayed for him to do and felt his confirmation). I know he has me in his grasp, I know I am saved, I know what I feel, but I can't prove it. Another echo gram would show how my heart is functioning and could prove their point, or mine. I just won't accept this ICD right now, my body will reject it because my mind and spirit will be constantly rejecting it. These things I know for sure. I'm not ready    

The Saga Continues

Jun 06, 2011 - 2 comments

Well, I've seen an older more compassionate doctor who I really like but she didn't order any more tests and I'm a little disappointed that she didn't at least order one more echo gram to clarify her findings. She went through my case and is using the evidence taken thus far. She says I'm fitting into the grey area and my condition is a clinical call on their decision to implant an ICD. Again I'm hearing the term "sudden death" and I'm basically feeling that there will be no other choices for me. I hate being so skeptical about the implant but I just don't want it. I've scheduled the procedure nonetheless but if it weren't for my 2 children I wouldn't do it. I really feel that the grey area she is mentioning is more to my advantage than any of these doctors think because I just don't feel that bad and not once have I felt a flutter or any sign that I'm in such danger. I think it's just so unclear to them that they are falling back on this implant idea as a safety net. They've all admitted that this thing may never turn on but they don't dare recommend the risk of my not having one. I'll be severely pissed if I go years upon years with this thing in me and it never has to engage. It's almost like I feel that this thing better be going off all the time to make me comfortable with the idea. At least then I would know for sure I need it. I'm not happy, I won't be happy, I won't feel any safer, I fear I will become so bitter that it will affect my family and my happiness. Meanwhile they get to study me and make me a research case in the process. Would be better if I was seeing a doctor who has one in himself I think. I'm thin, this thing will protrude and make me so uncomfortable that I'll develop a complex about it I know. 2 days to go until they put it in. ****!!! AAAARRRRGHH!!!!!
      

Next Stage

May 14, 2011 - 1 comments
Tags:

ICD

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heart flutterings

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Heart

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Hope

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child

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Life

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family

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Love

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procedure

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problem

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PTSD from reviving by CV

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heart stopped



So, Ive seen my regular cardiologist who is a great guy and has no problems with providing me the pertinent information I need to know in order to handle my condition responsibly. I vented some in my last entry and come to find out it is common for people, who, have been brought back to life in such a manner (ie: being shocked with enough voltage to light up a baseball field, maybe I'm exaggerating a little, I don't know, but it sure felt like it,) to suffer from a fair amount of PTSD. I am certainly one of those people. It's been a hailstorm of emotion around here.
  My cardiologist says, based on the study, provided by the dr I didn't like so much, I have the worst case scenario for someone to be a candidate for an ICD implant. A "ventricular flutter" as it were which is why my heart stopped during the study. This apparently is worse than V TACH or V FIB. According to my cardio it is the type of thing that is a direct result of scarring on my left ventricular muscle which was formed after the first major heart attacks. I cried in the meeting with him, I cussed to him about the experience with the EP, all while my 2 year little girl was present as I didn't have child care to allow me to go by myself (this happens often these days cuz I'm a stay at home Dad right now)  I came home and prayed while she napped on the couch. I asked for a passage to give me some guidance from the Lord and as I opened my Dad's old bible, I read the first line that popped out to me and it said, "Thou shalt Love the Lord thy God with all thy heart, and with all thy soul and with all thy mind, this is the first great commandment, and the second is like unto it thou shalt love thy neighbor as thyself, , on these two commandments hang all the law and the prophets" St Mathew 22; 37-40. I think I'll hang my hopes in that. Meanwhile, I'll lay my heart condition in the hands of another Electro Physiologist, which my Cardiologist is recommending, to discuss a second opinion and the procedure of implanting an ICD to provide me with life should I have an event in the future. I've researched some products and like the Boston Scientific Teligen 100. I hope he says it's a good unit and will be open to my using it as opposed to others which seem to be bigger and less advanced. I am concluding, at the moment at least that this is the right move for me and my family. They say it may never even have to engage, but, better to be safe than sorry right?
      

My heart disease begins.

May 08, 2011 - 2 comments
Tags:

ICD/PACER.

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Heart

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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

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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?