Monday, February 13, 2017

Still tiptoeing on Monday

Wanted to update y'all (that's for our dear Texan friends in Japan) this morning.  Abby is about the same, emotionally and physically.  We are seeing a bit of improvement in her muscle weakness and pain.  The steroids began Friday night through IV.  So far the new treatment is going along hitch-free.  No word on when we get to bring her home.  As far as I know her liver and kidneys haven't gotten any worse.  No news yet on the liver biopsy.  We did have a lovely visit from the rheumatologist ("Hi, I'm a rheumatologist." Don't hear that everyday.  Kinda like during radiation when one guy came in and said, "Hi, I'm a physicist.") Anyhow...the rheumatologist, who would have Abby's case if she wasn't a BMT patient, looked Abby over, explained things really well, gave us lots of information, and listened to all our questions and gave good answers.  Nothing new really but he reiterated the auto-immune factor to this.  It's officially called myositis and necrotizing myositis. The immune system, either from a virus, a reaction to drugs, or GVHD, has recognized a threat in the muscles.  It mounts an immune response to deal with the threat but then sees the results of its attack as another attack and starts dealing with that. So, the end never comes to the attacking unless you suppress the immune response with steroids first, then something else if need be later on since being on steroids for too long isn't good.  The muscle biopsy, although it wasn't conclusive on telling them if it's GVHD, can predict future treatment course so that's great.  Those tests won't be finished until later this week.

Meanwhile.... Abby is taking a lot of pills with a throat that (being a muscle) doesn't work very well.  She is doing her best to stretch and maintain her range of motion in her elbows and ankles.  She is watching movies, eating a bit here and there, and wanting very much to go home.  Oh, and the rheumatologist said not to hit hard with the OT/PT because it could damage her muscles at this point. That was good news because doing all the exercises has been really difficult.  Backing off a bit sounds wonderful to us all.

I think we have a long road of rehabilitation ahead of us but at least we have a direction to head.  That feels good.  We are, of course, exhausted but God keeps providing in all sorts of ways.  Thanks from all of us for your encouragment, prayers, and support.


Unknown said...

I am so sorry Tiffany. All that sounds pretty hard, painful, and confusing. Thanks for the updates. You all are on our hearts and in our prayers. Much love, Katie

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