Pacemaker/Defib Explant Scheduled

• by Phenom212
• 2013-05-31 01:05:05
• Surgery & Recovery
• 2672 views
• 6 comments

Hello Everyone,

I'm new to the Pacemaker Club, so I'd like to introduce myself. My name is Mike and I am a 27 year old male who presents with 3 previous incidents of Myocarditis dating back to 2002, 2005 and recently 2011. My first episode of myocarditis was in November of 2002 after a trip to China (July through August). I caught something while overseas (perhaps a stomach flu?) and was fine upon my return to the United States in September. In November, I developed symptoms very similar to strep throat, but I waited too long and developed chest pain which prompted a trip to the emergency room.


It was discovered that I was suffering from peri-myocarditis as a result of strep throat working its way to my heart. I was treated with IVIG and prednisone, recovered after 2 weeks in intensive care, and released on beta blockers (atenolol 25 mg). I returned to normal life with no restrictions when in 2005, lightning would strike twice. It began with a pulled neck muscle, followed by a bad case of gastroenteritis the following day, and on day three the oh so familiar chest pains of myocarditis reared its ugly head. My troponin levels were elevated and it was confirmed that I was indeed suffering from a second bout of myocarditis. I was treated with IVIG and prednisone, recovered fully and was released on Atenolol and PenVk as a preventative for what they thought was strep throat related (though the test came back negative this second time?).



From 2005-2007, everything was great. I was taken off of atenolol and penVk in 2007. I joined the State Troopers down in Florida and was living my life long dream of becoming an officer. Then in 2008 I was hit by a drunk driver while in my patrol car and subsequently forced to leave the department early due to my injuries. I had a Laminectomy/Discectomy with fusion on my L5-S1 with Dynesys Stabilization (?). Then one night in June of 2011, I began to suffer from a stiff neck. I thought nothing of it, but it wouldn't go away. I took Advil and called it a night. When I woke up I still felt stiff and funny. Throughout the day the pain in my neck started creeping up towards my chest. I knew the pain right away and when my parents arrived they knew I had to go in to the ER.



I don't know what it was with the doctors in Homestead Hospital, but they kept asking me if I did drugs, etc. I understand a young person presenting with the onset of what looked like a myocardial infarction was rare and often times attributed to cocaine, etc, but such was not the case with me. They didn't believe in the efficacy of IVIG and prednisone, so they treated me as if I was having a heart attack (though the ER Doctor specifically told me "It's a 1 in a million chance that you're having a heart attack or heart failure. Just relax")



They administered Nitroglycerin, Plavix, Lovanox, Toradol and Morphine. I was then transferred to Kendall Hospital in Miami to undergo a cardiac catheterization to ascertain my condition and confirm myocarditis if necessary. A few minutes after I arrived at the new hospital, I was seen by the attending ER physician and told they would perform the procedure in the morning. Not too long after that I was on the phone with my family when I began to feel very dizzy and out of it. The nurse happened to be next to me at this time. I felt like a black curtain was pulled over my eyes and I was out. I flat lined and a code blue was called. I suffered a Ventricular Tachycardia / Ventricular Fibrillation without warning.



Once again the myocarditis (which was confirmed) was of idiopathic nature and this third time resulted in "death." I was and still am confused. A pacemaker/defibrillator was implanted after brief treatment with amiodorone (hated this medicine..), lysinopril (hated this one even more--made me cough like a crazy person) and mycardis (blood pressure medicine).




The surgery went well and the ICD unit was successfully implanted. I've lived with this since July of 2011 and I hate every minute of it. I see the box sticking out of my chest every day (I'm 138 lbs and it's VERY noticeable). Psychologically I feel broken. I do give thanks for being revived (I was dead for over 3 minutes) and for my second chance (third, fourth? I've had so many near death experiences it's not even funny....)



I've been off of all medication since January of 2012. My Ejection Fraction is and has hovered from 67-69 percent which is a far cry from 38-46 percent during my myocarditis. I am now faced with a decision....



I have been given the option to remove the ICD device with the wires and continue with my normal life. The EP, my cardiologist and all the doctors assigned to my case feel it is a viable option given that I've been suffering from blood clots attached to my pacer wire for the last 4 months. 4 months of Coumadin treatment have dissipated the clots, but now that I've had a clot or two on the pacer wire, the propensity for more is very likely. They fear a pulmonary embolism or aneurysm may occur if these blood clots go undetected. I do NOT want to be on coumadin my entire life. It makes me feel like death and I'm depressed.....I lose my appetite as well.



I had my consultation today and the risks were explained to me. 2 percent chance of death as opposed to the standard 0.5 percent for any other type of surgery. 5-10 percent chance of bleeding resulting in immediate open heart surgery. The surgeon put it at 80-85 percent chance of success without a hitch while 15 percent chance of light complications to severe (death).



The surgery would be 4 hours long and recovery would be a few weeks. He doesn't fear infection because he's taking equipment out, not putting it in (though infection risk is inherent with any surgery).



There's an obvious dilemma for me. If I don't have the ICD device and I happen to suffer from a sudden onset of Ventricular Tachycardia/Fibrillation, there are no second chances. Period. But the odds of that happening given I've had myocarditis three times and only suffered cardiac arrest once after a flurry of medications that I suspect may have initiated some of what happened to me are very slim. The odds of another blood clot or multiple thrombi is very likely given the pacer wire is in the same spot and already has some scarring from the last blood clot.



I'm excited at the prospect of getting this thing out....believe me. I want my life back. I'm existing, not living. There is a big difference. At the same time, I don't want to make a decision without weighing EVERYTHING. This is life altering.



Do I take it out or leave it in? In 5 years I'll need the battery replaced and it was explained to me that wires/leads need to be replaced soon thereafter since they do not last a lifetime. By that time more scar tissue will have formed and being closer to 40 will only increase the risks. It seems to me that I am avoiding the surgery now if I choose to keep the device, with inevitable intervention 7-10 years down the line for lead/wire replacement anyway, only with an increased risk.



I hate being without a safety net, but if that means I get 10 years of great life instead of 30 years of misery and depression, I'll take it. That said, I want to live to be 100 like everyone else...lol....



Thoughts anyone? If you've read this much, thank you! I wrote a book....I know....



-Mike-





PS: I have an underlying suspicion that the mix of drugs given to me at Homestead Hospital may have initiated the tachycardia...the morphine lowered my blood pressure and the nitroglycerin given to someone with low blood pressure may indeed introduce ventricular fibrillation, though it is not entirely corroborated based on studies that I have researched. I'm no doctor, but it just seems funny that out of three times with myocarditis, the one time I suffer cardiac arrest is when they change the treatment protocol and give me all of these drugs......thoughts?