Hello JB; we're surviving okay at the moment. Wife is going to have a parathyroidectomy soon that should stop the calciphylaxis problem she's having. I'm getting the immunoglobulin infusions at home now instead of at the hospital.
I will have to have that surgery at some point myself, but the PTH nor calcium levels are not high enough to warrant doing it yet. The sestamibi scans haven't shown any hot parathyroids so far. We have one of the best endocrine surgeons in the country locally.
She will feel like a different person after the surgery, it is an almost immediate reduction in calcium levels. Good luck to her it's a pretty simple procedure for a single parathyroid, beats the old surgery by a mile.
At least you don't have to travel to get the infusions, hope you improve.
