Mar 19, 2015

Hey friends,

Thank you for checking in and for your continued prayers!  So much keeps happening, and this journey just gets more and more complicated.. :/

But this I remember: the Lord fights my every battle, so I will not fear.  He goes before me and never forsakes me!

Some of my blood counts have been steadily dropping since December, and I’m now anemic.  That and low grade fevers every day hasn’t been fun.  My primary care physician ordered a bunch of labs, and we found out that I’m very deficient on ferritin (even while on TPN).  I should hear soon what the plan is for that.  And, I see my GI dr. next Thursday for a much needed follow-up.  If the ferritin deficiency is not what’s causing the anemia, then my PCP will be referring me to Hematology.

Last month, my cardiac electrophysiologist referred me to General Cardiology to discuss my recent heart echo results.  That appointment was this past Monday.  The dr. went over the echo images and explained that the wall of my descending aorta (in the abdominal area) is very irregular and “jagged” which is not normal.  It’s supposed to be smooth.  She’s not sure what to make of this and whether it will cause problems, so she ordered a cardiac MRI to investigate this further.  This will be my 17th MRI scan…

Today I had a modified barium swallow study, esophagram, and ENT follow-up.  Long day!  The results of the two tests show that the movement (peristalsis) of my esophagus is very slow….food and pills I swallow get stuck and don’t move down well from my mouth to the stomach.  This is called esophageal dysmotility.  My ENT dr. isn’t surprised that I have this because I’ve already been dealing with small intestinal dysmotility and large intestinal dysmotility….my whole GI tract is affected. 🙁  This is because there aren’t enough mitochondria in my GI tract (caused by the mtDNA depletion).

I had these two tests done last year, and my ENT dr. compared them.  Things have worsened since then.  Unfortunately, we won’t know what will happen a year from now..

Mitochondria are in every cell!  That’s why mitochondrial disease affects SO much.  It’s not just a muscle disease or heart disease….it affects the intestines, muscles, heart, brain, autonomic nervous system, eyes, and anything else you can think of that requires energy!  I recall hearing a talk by a mito specialist in LA, and he explained that “energy is the difference between life and death.”  Many people often say I look so normal…that’s because mito is a disease that affects at the cellular level.  Anyways, enough of my rambling….just want to raise awareness. 😉

Every time my doctors discover more and more that’s wrong inside my body, the only thing I can do is rest in the Lord.  He has a good purpose in every single thing that happens!

Post written byKerissa

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