by Greg Cazemier
I was in the emergency room (ER) with chest pain at St. Charles Hospital in Bend, Ore., and was sharing with Dr. Gillian Salton (my ER Angel) that I was feeling weak all over. I could not get up from a kneeling position, couldn’t get off a toilet, and I was having trouble putting dishes in the upper cupboards. When I told my family doctor several months earlier that I was getting weak, he replied, “Greg, I believe you believe that.” But my ER Angel listened attentively and asked for my permission to work on my weakness issues while I was in the hospital. In approximately one hour, she came back and said, “I have some evidence your doctors are going to have to deal with, including a CPK blood test of 7,000-plus, which shouldn’t be over 365.”
Subsequent testing over the next few days properly diagnosed the cause of my weakness as necrotizing myositis (NM). Because of that diagnosis, I’m receiving intravenous immune globulin (IVIG) treatments, and I’m doing great! Thanks to my ER Angel for listening and for taking an interest and action to get to the bottom of my symptoms. But that’s not the end of the story.
Medicare has not paid for my IVIG treatments for more than a year, and the bills have mounted to several hundred thousand dollars. I wrote to IG Living magazine and asked if they had any information about dealing with IVIG treatments and Medicare. Subsequently, I received a phone call from IVIG Angel” Leslie Vaughn with NuFACTOR Specialty Pharmacy in California, who volunteered to help. My new IVIG Angel has drafted a Medicare appeal letter for my doctor, located numerous medical articles supporting the necessity for my IVIG treatments for NM, and has been in direct contact with Medicare officials regarding moving the appeal forward. Furthermore, she is working to get my IVIG treatments approved at home through my prescription plan.
Medicare has not approved my IVIG treatments to date. However, I am confident after talking with my IVIG Angel, reading the appeal letter and supporting documents that we will prevail. Living with a chronic illness is difficult. It’s a great comfort having angels listening and taking action on our behalf.
Who are the angels in your life?