Apr 14, 2015

Hi everyone,

Your prayers would be appreciated!  The past two weeks, I’ve been feeling worse than usual…very sleepy especially. 🙁  To be honest, I just feel plain crappy, and whenever that happens, the CRPS always ramps up—the nerve pain has been really bad lately.  I’m still pale and short of breath as well.

We found out that my white blood cell count has been dropping (it did go up a little bit this week, but it’s still not my normal), so my primary care physician is referring me to OHSU hematology.  We’re not sure if this is mitochondrial disease-related or if something new is happening.  She wanted the soonest appointment available, so it’s scheduled for next Tuesday the 21st.  I see God’s goodness in this—the hematologist I’ll be seeing is another Top Doctor.  He’s nationally renown, and even my GI dr. has heard of him. 🙂  I’m just so blessed to have a knowledgeable and caring medical team for my complex case!  And it makes this rough journey a little easier, knowing that I’m in good hands.

I had another follow-up with my GI specialist this afternoon.  Unfortunately, I still haven’t noticed any extra energy with the IV iron infusions, so he is ordering a bunch of different labs to see if I’m deficient on certain minerals while on TPN.  He’s also ordering a carnitine panel.

I tried tube feeds last week at 10 mls per hour, but after receiving just 16 mls, I felt sick to my stomach and got super distended.  So I have to decrease to a rate of 5 mls—-that’s one teaspoon per hour..!  That’s not enough to live on, so I still have to receive TPN and lipids.

I will be sure to update next week after the hematology and sleep medicine appointments.  The Lord is my hope and strength! 🙂

This is what iron looks like.  My GI dr. said 5 small bags of this is equivalent to receiving about 8 pints of blood!

Post written byKerissa

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