Sunday, January 19, 2014


Friday morning I was desperate to get Fiona's medicine. It could have been shipped overnight and it could have arrived on Saturday. Now we won't get our order until at least Wednesday. That would be okay except this treatment is a major part of Fiona's immune system. I know I say this all the time, but she is worse off than an advanced AIDS patient. An AIDS patient still has functioning B-cells, and can take drugs to fight the virus that is suppressing their T-cells. Because a virus isn't causing Fiona's deficiency her best treatment is Hizentra. Delaying this treatment is putting her at risk.

Because of my desperation I called our local Walgreens to see if I could get a week's worth of Hizentra from them. While I was on hold I had the horrible realization that they would want us to pay for the prescription up front. I was trying to think of how I was going to pay for it. Then I remembered the fundraiser. Can I tell you how much of a relief it was to know that it would be okay. Thank you to all of our donors! Unfortunately, Walgreens doesn't carry Hizentra because they have a mail order infusion service.

Friday afternoon Accredo called and I was told that they needed to verify my information, and that they were working on the insurance approval. The woman I spoke with said that someone would be calling me to set up my order, and if they didn't have the pump I was used to they would also set up a nurse visit so I could learn how to use the new pump. I'm not thrilled that they didn't finish the order on Friday. Monday is a holiday, so my best chance to get Fiona's treatment will be a call to Cincinnati on Tuesday. At this point I wonder if Accredo will even have our order shipped in time for next week's treatment. Every time it seems like we are moving forward they seem to loose traction.

Fiona's fundraiser

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