Sarcoidosis And Me
National Sarcoidosis Organization
Awareness is Key - Research is Power - Support is Everything
Joined Jun 14 2012
53 years old
My husband was diagnosed with Sarcoidosis in 2005 when his lymph nodes under his jaw were so swollen there was no denying something was amiss. He went into remission for 5 years with absolutely nothing until last summer. That's when our life kind of fell apart. He told me one sunny day in August that "he didn't feel well but he wasn't quite sure what was wrong". On a hunch I phoned his specialist and ran it by him. He asked me to take him to ER. Ever tried to get past triage in ER on a "I'm just not feeling well", let alone the nurse and the resident then the doctor? But my husband was blessed that night as the doctor humored me by running some tests. At 2:00 am there was a flurry of activity as the lab results came back with a really high calcium count and his kidneys failing. They dropped boulis after boulis (Rapid IV solution) into his veins then sent him for a PET scan. He lit that scan up from head to toe. So started a month long hospital routine. Sound like an episode from "ER"? Scared the crap out of me and our kids. Seven months later on a predisone and insulin diet (diabetic) he was feeling much better and they weaned him off predisone. Less than six weeks off predisone and he is in another (or maybe the same) flare. This time the symptoms arose in his bones, head to toe. No other symptoms with it. My biggest complaint: can't the symptoms be consistent so I KNOW when I need to help him. Never have we had the same symptom twice.