Jan 16, 2015

Hey everyone!

My GI appointment on the 5th went well. 🙂  As my GI stated, TPN is a blessing and curse.  The abdominal pain, distention, and nausea has been nothing like before, and I’m so grateful to the Lord!

Oral eating is recreational now rather than a necessity, so my small intestine has been getting better rest than before.  But, I still have hypoactive abdominal sounds which is not very good.  Also, as I mentioned in the past, we always have to be on the watch for infection since my PICC line goes towards my heart.

1 1/2 liters of TPN fluids and lipids every 12 hours has been hard on my neurogenic bladder, but aside from that, I’ve been tolerating TPN well. 🙂

Every single time I shower, I have to cover my arm in saran wrap and tape!

All the TPN and lipids that get delivered weekly…they have to be refrigerated.

Haven’t noticed any extra energy still, and I’ve been sleeping even more—TPN can destroy red blood cells, and some of my blood counts have been lower than normal which could explain the worsening fatigue, so my GI is watching that.

I saw the pain team on the 6th for the CRPS around the PICC line area.  The slightest touch caused so much nerve pain in my arm!  So my pain dr. added yet another oral pain medication and ointment to my list of meds.  They have helped a lot! 🙂  It is a win/lose situation, though, because pain medications make GI motility worse.. :/

This past Tuesday, I had physical therapy, and yesterday was a follow-up with my PCP.  She is referring me to ENT for my lingering cough/swallowing issues.  Today, I saw an orthopaedic foot dr. regarding the lymphangioma (vascular tumor) that was in my right foot back in 2010.  He ordered an ankle/foot MRI with and without contrast to check for/exclude recurring tumor.  This will be done after my parents and I get back from San Diego.

Speaking of San Diego, it’s finally here!  I have a follow-up with my mitochondrial specialist to go over all the results/tests on January 20th.  My parents and I leave on Monday the 19th and come home on Thursday the 22nd—a quick trip!  Please pray that the dr. will have wisdom and insight regarding all the results.  My case is very complicated, and more than one thing is going on which makes things so tricky….I won’t be surprised if he has to order more genetic testing.. 🙁

Thank you all for your faithful prayers!


Post written byKerissa

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