Dedicated to the memory of Mike Oliver  

POEMS Tips  

I recommend checking to see if your carrier has health coaches, or member advocates, something like that. I found one after reaching a breaking point when my husband, Neil, was being diagnosed. When I started sobbing with the customer service rep, she referred me to a health coach. They are sometimes available to people with complicated cases, and can help navigate the system.
Try and try again.

-Barbara Ross 

Mayo Clinic was out of network for us too, but the stem cell transplant including all the tests pre- and post-transplant fell under a "special" category and was covered 100% by our insurance provider. I can't remember the term but it was categorized with other transplant procedures and was considered a special circumstance.

-Carole Gilligan 

While not specific to POEMS, we recommend that estate planning be secured prior to facing the final stages of illness.  Current wills are important and remove the need for guess work and possible problems.  We found success documenting specific items to specific people as a list included in the will.  Common sense and observation of your state specific laws will provide the guidelines; extra care may need to be exercised for blended families. 

-Michelle Bergamo and Krystle Oliver

My original Neurologist sent a referral to Mayo to be seen, but the request was rejected from their Neurology Department. If a referral is an option for you, make sure that it is sent to the Hematology Department. Also, we struggled with our insurance company. We had a health coordinator at Mayo as well as our insurance company to coordinate all tests and treatment. Keep calling your insurance company to make sure they are doing their job in getting medical costs covered. Also, contact the American Cancer Society. 
Our chapter just raised over 1 million in donations. (Relay For Life) My husband kept on everyone's backs to get answers for my problems. It may be up to you to do that for your loved one. I am on the caring bridge web site, as well. It is an excellent way to communicate with loved ones while you are going through tough times. My husband would write everyday while I was going through treatment. It sure saves on repeated conversations when you are exhausted. Here is mine if you would like to see how it works:

-Susie DeSanctis 

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