Monday, January 25, 2016

Trekking on.

Hey friends,

Just wanted to share some news---my liver enzymes dropped and are now in the normal range!  My hepatologist thinks I had autoimmune hepatitis which resolved quickly (must be because of all your prayers! :)  Thank you, Lord!!  He really does hear our prayers!  My magnesium level is still not where we would like it to be, but my hepatologist (he's my GI dr. for now until my main GI specialist returns from out of the country) added even more magnesium and 2 different types of potassium to my daily IV fluids which I now receive for 3 hours.

He also called me last week and restarted me on prescription zinc because one of the copper blood tests for Wilson's Disease came back even higher. :(  He explained that high copper in the body compromises liver mitochondria which is not what I need since I already have a mitochondrial depletion.  He plans to talk to a Wilson's expert at Yale and possibly a geneticist in Canada regarding treatment because he's not exactly sure what's the best way to proceed since my case is so complicated.

Sadly, the CRPS pain in both of my hands and feet has flared up a ton, and I'm not sure why.  My feet are swollen and discolored.  It's so painful to even stand or sleep because the bed sheets cause burning pain.  That's how bad CRPS is. :(  My pain dr. is booked out till March, but thankfully, she had a cancellation.  So I now have an appointment scheduled in 2 weeks (it's at 7:30 in the morning!!).  I wish it were even sooner. :/  I took more of my as-needed pain medications to calm the CRPS down, but they worsened my GI dysmotility.  Even super soft food gave me horrible abdominal pain all day. :(

My mom, dad, and I leave for San Diego in exactly 3 weeks!  I'm glad I'll be seeing my mitochondrial specialist---I need to update him on all that's happened!


Picture #1: what it's like to live with mitochondrial disease....these are all my meds and supplements...!

2 comments:

  1. Thanks for sharing. Your blog is very inspirational. I appreciate how transparent you are with your journey. Taking all those meds and supplements must keep your mind sharp. My prayers continue to be with you today; with your docs and family and you upcoming trip to CA.
    Blessings, Jennifer Anderson

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    1. Thank you so much, Mrs. Anderson! I so appreciate your prayers on this journey! :)

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