THIS IS MY STORY . . .

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Nov 13, 2015

Hey friends,

My liver biopsy last Friday went very well!  Thank you so much for praying!  The doctors were able to obtain two specimens without complication.  After the biopsy, though, my kidneys took a hit that weekend, and I suddenly gained 4 lbs. of fluid. 🙁  We weren’t sure what was going on and if this was a new symptom related to the mitochondrial disease.  Thankfully, they slowly recovered and I’m getting rid of the fluid!  My local mito specialist whom I saw on Tuesday suspects this was caused by the one of the drugs used for sedation during the biopsy.

Yesterday, my GI dr. called me with the initial liver pathology results (the copper results from Mayo aren’t back yet).  Some mild inflammation was found in my liver but no sign of cirrhosis, hepatitis, etc.  That’s good news!  He thinks the inflammation is from TPN (IV nutrition can damage the liver which is why it’s not ideal).  Speaking of TPN, next month is one whole year of being on it!  Hard to believe.  I know there are big risks and it’s only used as a last resort as my GI dr. states, but lots of blessings have also come as a result of TPN—I haven’t had an ER visit for a “mito crash” in over 8 months (I used to have to go every 2-3 months!).  The IV fluids, amino acids, extra vitamins/minerals in the TPN have helped so much.  The nutrition has also prevented all the coughing/retching I used to deal with every single night due to a weakened esophagus.  It was horrible, and I hardly got any rest.  So I’m very thankful that went away. 🙂

Still working hard in physical therapy every week.  My mito specialist at Randall Children’s thinks my “foot drop” (a neurological symptom) has improved somewhat. 🙂

This coming Monday I have another follow-up with my GI dr.  Hoping the Mayo results will be back.  I’m dying to know my liver copper level!  It never gets any easier waiting for results.. 🙁

Every single Wednesday, this huge stack of boxes gets delivered to our door.  I wonder what the UPS delivery guy thinks! haha 😉  The boxes contain all my IV nutrition, IV fluids, and central line supplies!

Post written byKerissa

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