Since I was first diagnosed with sarcoidosis, it seems that I have more doctors appointments than anything else. I have five different doctors that I see regularly. It gets to be a dance but luckily they all communicate with each other so they are all on the same page. Three of them, sarcoidosis, heart failure and electro-cardiologist specialist are in Mt. Sinai hospital which is an hour away from me, so to go into the city can be a chore. If I go in I try to see everybody that I have to see on the same day. I avoid the heart failure specialist because he just wants to slap a new heart and two new lungs in my chest and call it a day. I am not ready for that.
Yesterday I had my AICD interrogated and saw the sarcoidosis specialist. I was dreading the sarcoidosis specialist because I don’t enjoy the pulmonary function test, and I am now getting over a cold and expecting the test results to be less than spectacular.
My ICD interrogation revealed that I had a fibrillation in December, but the ICD took over and regulated the heart beat before it needed to give me a shock. I pretty much knew when that happened as I had just walked up a hill when I felt it coming on. The ICD interrogation in clinic is not fun as they test it, and it makes the heart all wonky, and it feels crappy. Luckily, that was all over quickly.
Next was my sarcoidosis specialist. I had my PFT (pulmonary function test) and a lung x-ray, and since being diagnosed with sarcoidosis, this test had the best results ever. My lung function has improved, the lungs have cleared up a bit and my heart has reduced in size! My echo in September showed my heart’s function also improved. It’s all good.
Three years ago when the doctors discovered that the sarcoidosis had spread to my heart, my heart function was 25%, I was told that heart failure from sarcoidosis was irreversible, that I would only get worse, and would need a heart/lung transplant. Today I have proved them all wrong, and they are baffled. I am better, stronger. I am the bionic man. Well, not exactly. Still got to get over this possible pre-diabetic crap. Soon, I will lose the 30lbs I need to and be as close to perfect that I can be.
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