Wednesday, August 2, 2017

Gammagard Approved!

Off the topic of our Yellowstone vacation, and back to the Immune Deficiency discussion... hey, this is about my life and it is definitely a part of my life... sorry folks...  Here goes...

Remember?  I was in the hospital for 11 days so they could try to cure my forever sinus infection.  My IgG numbers had plummeted 200 points which means my antibodies were not in a good place - as well as my t-cells from my previous diagnosis.  Dr Carey decided I needed to start on IgIV immedicately to help control the constant infections that I get.

Then Dr Carey talked with NIH and they decided that it would be ok to wait a bit even with my IgG numbers low and see what happened.  What happened was after 11 days in the hospital, I went on vacation.  Exactly 2 weeks after I got off of the IV antibiotics, I got another sinus infection... a nasty one.

So I went for another visit wit Dr Carey (by the way he is my clinical immunologist) and he said I needed the IgIV if there was any hope of getting the sinus infection under control.  They filed with my insurance and it was immediately approved - no questions asked!  $20,000-$25,000 a month for the infusion and they approved.  That took me (and I believe his staff) by surprise.  My infusion nurse called today and I start one week from tomorrow... My first ever infusion day is August 9th, 2017 and if the insurance continues to approve it, it will be for the rest of my life.  I am preapproved for 6 months.  They will reapply in December.  This is another part of the immune system that never returns - but this part CAN be helped by replacing what is missing - my IgG antibiodies.

I am not reading up on Gammagard, a blood product, and it's side effects.  I have, however, asked my friends on the immunodeficiency board and there ARE side effects and asked about the preparation before taking it to try to quell the side effects.  I am to hydrate, hydrate and hydrate with V-8, water, Gatorade and good stuff for 2 days prior, the day of and 2 days after.  And I should expect to feel like I have been seriously hit with a bad case of flu and be in bed for several days after each infusion.  Sounds like fun, right?  The people on the Immune Deficiency Board say it is sooo worth it.  I am hoping this is a turn in the right direction.

But each unit (infusion) is a blood product taken from about 10,000 people.

That is all.

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