Living with IGCM (Idiopathic Giant Cell Myocarditis)
I count myself as lucky--most people with this diagnosis would have a heart transplant by now. My cardiologist attributes my better condition to a variety of things: 1)it was caught "early" in the progression of the disease; 2)I got onto the immunosuppressants and steroids quickly; 3)the disease seems to have focused mostly on my right ventricle and although it is probably present in the left ventricle, has not caused too much damage to the heart's pumping function (making me a unique case among rare cases), and 4)the progression of the disease has not been rapid and extensive as most other cases seen by my cardiologist.
I am doing what I can to keep my current heart. This means keeping stressors on my heart low: low sodium, low extra fluid, low sugar intake (the high steroid doses are screwing with my blood sugar levels), mild exercise, regular medication regimen, and reduced anxiety/stress levels. Lots to monitor and regulate.
I go back in this Friday, April 21, for another cardiac biopsy of my right ventricle tissue. Dr. Smith hopes to get some samples that will indicate the current condition of the IGCM and whether things have improved...or stayed the same...or whatever. Since the last biopsy landed me in the hospital, I intend to take stuff with us in the car so that if I get admitted to the hospital again Janie won't have to travel back and forth with everything.
I am beginning to read a book I picked up from Amazon by Naparstek on Guided Visualization and Imagery for Self-Healing. Because of my background in biofeedback and self-regulation I know that it's possible to make connections between mind and body. I'm trying to learn more about how you "connect" with an immune system and help "re-regulate" it. I don't want my immune system to shut off, and I don't want it to get stronger and continue to attack, I want it to re-direct itself so it doesn't attack my normal, healthy heart tissue. Most MDs don't see autoimmune disorders as something that "turns off" over time, and Dr. Smith envisions I'll be on immunosuppressants and steroids into the far future. I'd rather see what I can do about making that an option rather than a requirement.
I am doing what I can to keep my current heart. This means keeping stressors on my heart low: low sodium, low extra fluid, low sugar intake (the high steroid doses are screwing with my blood sugar levels), mild exercise, regular medication regimen, and reduced anxiety/stress levels. Lots to monitor and regulate.
I go back in this Friday, April 21, for another cardiac biopsy of my right ventricle tissue. Dr. Smith hopes to get some samples that will indicate the current condition of the IGCM and whether things have improved...or stayed the same...or whatever. Since the last biopsy landed me in the hospital, I intend to take stuff with us in the car so that if I get admitted to the hospital again Janie won't have to travel back and forth with everything.
I am beginning to read a book I picked up from Amazon by Naparstek on Guided Visualization and Imagery for Self-Healing. Because of my background in biofeedback and self-regulation I know that it's possible to make connections between mind and body. I'm trying to learn more about how you "connect" with an immune system and help "re-regulate" it. I don't want my immune system to shut off, and I don't want it to get stronger and continue to attack, I want it to re-direct itself so it doesn't attack my normal, healthy heart tissue. Most MDs don't see autoimmune disorders as something that "turns off" over time, and Dr. Smith envisions I'll be on immunosuppressants and steroids into the far future. I'd rather see what I can do about making that an option rather than a requirement.
posted by JayVS | 6:08 AM
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