My Valentine's Day Diagnosis
I went home from the hospital and pacemaker installation on January 28, not knowing why my heart was in the condition it was. My meeting with my cardiologist, Merlino, on February 3rd, didn't provide any further explanation on why this had occurred. None of the tests he'd done came back positive for any problem he'd checked. One cardiologist thought I might have ARVD (Arrythmogenic Right Ventiricular Dysfunction), a genetic disorder.
On Thursday, Feb 9, I felt bad. My heartbeat felt fast and irregular. I called up and scheduled an early meeting at the Arrythmia Center at Crawford-Long Hospital. I guessed something was wrong when the pacemaker technologist electronically interrogated my pacemaker and then the next thing I knew there were 2 more nurses and a couple doctors that quickly filled the room. The lead doctor informed me my heart was in ventricular tachycardia at 160 bpm and that was not good. However, using the pacing abilities of the pacemaker, they got it back into a normal rate. They admitted me to the hospital.
In the next few days I went through a right ventricular catheterization, a cardiac biopsy, and they changed out my pacemaker for an ICD (implantable cardioverter defibrillator) that could not only pace my heart but also deliver a strong shock to get it out of an arrythmia if need be. (They wanted to make certain if my ventricular tachycardia progressed into ventricular fibrillation that I would be protected/prepared.)
On February 14, Valentine's Day, my team of doctors visited me and gave me the results of the cardiac biopsy. I did not have ARVD, but Idiopathic Giant Cell Myocarditic (IGCM). Basically, my own immune system was attacting my own heart muscle. This disease is characterized by the fusion of white blood cells into giant cells (multiple nuclei within the giant cell), with these giant cells attacking the heart muscle myosin fibers. I would need to go on immunosuppressants to reduce my own system's response, high doses of steroids to reduce the inflammation of my heart, and various drugs to reduce heart stress and the side effects of the other drugs. I started reading about IGCM and didn't like what I read. A 1997 study indicated that about 60% of people diagnosed with IGCM had to have a heart transplant (or died) within 6 months of diagnosis. About 20% of patients were able to stay on the drugs and keep their original heart out to 5 years (the length of the study). My new cardiologist, Dr. Andrew Smith, the leading authority in Atlanta and Georgia, began meeting with me. As the leading authority, he did say it's fairly rare: he has seen 5 cases in the last 14 years. A colleague of his in Alabama has seen about 8 to 10 cases in the last 20 years. So there's not a lot of cases to build upon. He would be closely monitoring the status of my heart using echocardiogram and cardiac biopsy into the future, and we would prepare for a possible heart transplant. He was optimistic, though, because my heart's pumping function was still strong and I was not presenting as a fulminant case (full blown, rapidly deteriorating heart disease). I was released from the hospital on February 16.
On Thursday, Feb 9, I felt bad. My heartbeat felt fast and irregular. I called up and scheduled an early meeting at the Arrythmia Center at Crawford-Long Hospital. I guessed something was wrong when the pacemaker technologist electronically interrogated my pacemaker and then the next thing I knew there were 2 more nurses and a couple doctors that quickly filled the room. The lead doctor informed me my heart was in ventricular tachycardia at 160 bpm and that was not good. However, using the pacing abilities of the pacemaker, they got it back into a normal rate. They admitted me to the hospital.
In the next few days I went through a right ventricular catheterization, a cardiac biopsy, and they changed out my pacemaker for an ICD (implantable cardioverter defibrillator) that could not only pace my heart but also deliver a strong shock to get it out of an arrythmia if need be. (They wanted to make certain if my ventricular tachycardia progressed into ventricular fibrillation that I would be protected/prepared.)
On February 14, Valentine's Day, my team of doctors visited me and gave me the results of the cardiac biopsy. I did not have ARVD, but Idiopathic Giant Cell Myocarditic (IGCM). Basically, my own immune system was attacting my own heart muscle. This disease is characterized by the fusion of white blood cells into giant cells (multiple nuclei within the giant cell), with these giant cells attacking the heart muscle myosin fibers. I would need to go on immunosuppressants to reduce my own system's response, high doses of steroids to reduce the inflammation of my heart, and various drugs to reduce heart stress and the side effects of the other drugs. I started reading about IGCM and didn't like what I read. A 1997 study indicated that about 60% of people diagnosed with IGCM had to have a heart transplant (or died) within 6 months of diagnosis. About 20% of patients were able to stay on the drugs and keep their original heart out to 5 years (the length of the study). My new cardiologist, Dr. Andrew Smith, the leading authority in Atlanta and Georgia, began meeting with me. As the leading authority, he did say it's fairly rare: he has seen 5 cases in the last 14 years. A colleague of his in Alabama has seen about 8 to 10 cases in the last 20 years. So there's not a lot of cases to build upon. He would be closely monitoring the status of my heart using echocardiogram and cardiac biopsy into the future, and we would prepare for a possible heart transplant. He was optimistic, though, because my heart's pumping function was still strong and I was not presenting as a fulminant case (full blown, rapidly deteriorating heart disease). I was released from the hospital on February 16.
posted by JayVS | 6:08 PM
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