Aug 11, 2015

Today, I saw my GI specialist.  It wasn’t very good news.

I mentioned in my previous post that some of my lab work has been steadily dropping even with 6x the normal amount of IV copper in my TPN.  This past Friday, my GI dr. personally called me to talk about what may be going on.  He told me that he’s going to get in touch with some doctors who specialize in copper metabolism diseases (a dr. in San Francisco and one on the East coast).

So this morning, he was able to connect with the dr. in SF.  This expert suggested looking into a rare metabolic disorder called aceruloplasminemia.  My GI doc researched it but doesn’t think I have it.  So now he’s going to call the East coast dr. to get his opinion.

In the meantime, he’s ordering a 24 hr. copper test (he wants to avoid a liver biopsy as much as possible) to further look into a genetic disease that causes copper build-up in the brain, liver, and other organs.  Even if the results are “normal,” that’s a bad thing because that means copper is building up in my organs and not being removed by the body.  So, basically, the results will not be good regardless if they’re “normal” or “abnormal.”  We don’t want either but it’s going to be one or the other.. :/

It’s hard to believe that my doctors are looking into yet another rare genetic disease to add to my long list, but these lyrics from one of my favorite songs by Michael W. Smith keep coming to mind:

Even what the enemy means for evil
You turn it for our good
You turn it for our good and for Your glory
Even in the valley, You are faithful
You’re working for our good
You’re working for our good and for Your glory

Give this beautiful song a listen. 🙂  It’s so encouraging, and the words are profound!  I know that whatever happens, even if I get diagnosed with another potentially fatal disease, the Lord is sovereign!!

P.S. My GI dr. wonders if a small bowel transplant could help my GI dysmotility (out of curiosity’s sake, he’s going to look into it).  I’m sure it would never happen, but if it can help, that’d be amazing! 🙂
Post written byKerissa

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