IG Living Blog

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Posted on 9. May 2013

Angels In Action

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?


Comments (3) -

Katy Boxley
11:22 AM on Friday, May 10, 2013

I have been doing the IVIG and now subcutaneous infusions at home.  Medicare has always covered this - whether in the hospital Out Patient or at home with a nurse or on my own.  Double check - you may get a nice refund.

Linda Thornrose
11:58 AM on Friday, May 10, 2013

Greg, your story is very encouraging!  I, too, have used the resources here at IG Living to help with access to my IVIG treatments.  They are a wealth of information!  Also, the ideas and inspiring stories from other patients and caregivers are always helpful.  I feel so blessed to be a part of such a wonderful organization!!  I have been having IVIG for CVID for ten years now and have experienced many challenges, as well.  The Lord sends angels in all forms, one of my favorites is through IG Living!

God bless you and may you continue to do well on your treatments.  I feel sure you will have victory with the Medicare challenges, too.  

BTW, I have had the blessing of having my treatments at home and covered by my insurance.  I turned 65 in December and am now battling Medicare on this.  I am hoping to get in on the demonstration project that Medicare is going to implement on the new home care coverage bill that was just past a few months ago...again, IG Living is helping with that, too!  

God bless you, and thanks so much for sharing your story.

Nynah Mason
8:08 AM on Friday, May 17, 2013

Greg, What a wonderful story and wonderful doctor!  How I wish we could all have such a knowledgable and on the ball doctor!  Don't give up on Medicare -regarding payment for treatment!  Enlist any and every resource you can find including looking for names of people researching your illness and names of doctors who specialize in treating same.  
Linda,  What department do you contact at Medicare regarding getting into the study  of IVIG home infusion?  Could you give me more information please?  Every time I go to the hospital for infusion I wonder if I'll pick up a "bug".  I was so much more at ease psychologically at home!  Thank you!

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