It's day 1. When I get ivig I feel it's important to write "from the trenches." Few people know about this treatment. Chemo.... we seem to have an understanding... but ivig is still not very well known.
I'm trying to remain flexible today. I'm getting a different brand today because of a shortage in the brand I was using. Remember... this product requires human plasma donation. So supply can get low.
Unlike many treatments, Ivig is an all day thing. I'm here from 9 to 530. Today, we are running into problems right and left. I pray that this goes ok.
At this moment, they are having trouble with my port so they are doing a procedure to declot it. Gosh it feels BAD to have fluid going into my neck when my port isn't flushing properly.
And...I need iv fluids badly. The closer we get to 11 am, the more likely it is that I won't get fluids. I may have them get a separate iv into my arm so they can run fluids while they do the ivig because we are running out of time.... and dehydration means a bad reaction tonight.
But through it all, I remain grateful. I'm alive. I have access to this treatment. It's working. And I have the best nurses helping to make this all happen.
Awake. Alive. Blessed.
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