Wednesday, April 13, 2011

Good omen...or good veins?

Today we trekked downtown again for a neurology check-up.  I often see the doctor's assistant, and sometimes rotate between the two.  Since they work so closely together, I get the same quality of care, but with a LOT less wait time for an appointment.  When you're seeing the head of neurology, that might mean a few weeks compared to the next day. 

Anyways, I think that we got a lot accomplished today.  We talked about a treatment plan, and decided on trying IVIG, and then steroids if I absolutely must.  She said that she should get word back from my insurance company pretty quickly because we have done all of the groundwork to prove the diagnosis.  I am crossing my fingers that they will pay most of the cost.  Each infusion is around $12,000, and I may need more than one a month.  Usually my insurance caps my out-of-pocket expense at $100 for those things, so I am praying and hoping. 

Because this is so rare, she needs to figure out what the loading dose is, how many days that will take, how often I need it, etc.  She is also getting approval for a port.  I'm not sure which type I'll be getting.  The assistant said that she'll get with the infusion center and their PICC nurse to see which might work the best for me and the treatment.  It may be a PICC line, but I'm hoping for a mediport that is under the skin.  Ports under the skin are a little more work to get in, and it will be sore while it heals, but the benefits make up for that.  PICC lines can't get wet, and they kind of dangle there.  So...we'll see.  Either way, a port will make it easier on me and the nurse administering the infusion.

There is a risk of a serious reaction with IVIG if I am IgA deficient, so after the appointment it was off to the lab.  Normally my veins play hide and seek, and I usually end up with 3-4 sticks in my hands.  The blood flow isn't great, and the phlebotomists struggle to get enough blood for the lab work.  This time, she got it on the first try in my elbow!  That has to be some sort of good omen.  With so many things going wonky lately, I can appreciate something so little.  I hope that good luck keeps up. :)

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