Aaron's Hyper IgM Journey

Thursday, April 26, 2012


Let's start with the good news.  Aaron's liver numbers are getting a lot better and he will likely have a full recovery for his liver.  I expect it will be several weeks to months before a full recovery occurs since his liver problems are probably caused by medications.  The doctors have also lowered his steroids twice now without his GVH flaring up.  The sooner we can get Aaron off the steroids and cyclosporine the better!!!

Many have asked about Aaron's hair growth (and I don't mean on top of his head).  This is due to cyclosporine and will go away after the medication has been discontinued.  This will be the last medication to be discontinued so the hair will probably be around for a long time!  His swelling is due to the steroids.  Some of it is water retention and some is actual weight gain.  This will improve as the steroids are lowered.

Now the not so great news.  Aaron has been raging for three days straight.  In the past, he raged because of the steroids.  We don't know what is causing his rages now since he has been on lowered steroid levels.  Aaron had a full body MRI today to see if he has any microfractures of his bones that could be causing pain.  We haven't gotten the results yet.  He also had a chest x-ray to see why he has been coughing.

His kidneys are not worse than before.  If anything they might be slightly better.  Since the steroids have been lowered, Aaron's blood pressure has come down a bit.  However, he is still on two blood pressure medications.  The doctors also had to add potassium, magnesium and calcium supplements as well as IV fluids since his kidneys are not regulating his electrolytes well enough right now.

I am hopeful Aaron can still make a complete recovery, but we are taking baby steps.

On a lighter note, my husband is cracking me up watching JT videos and saying that guy is good and long as he isn't in any stupid boy band.

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