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: caringbridge.org/visit/susandesanctis
-Susie DeSanctis
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