Dec 4, 2014

Hey friends,

I’d appreciate your continued prayers!  My small intestine is in bad shape.  Still can’t tolerate j-tube feeds or solid food orally.  And I’m now getting distended with just liquids… 🙁  The dysmotility in my small intestine has gotten so much worse.  Mitochondrial disease is horrible!  I’m being followed very closely by my GI dr.  We’ve been trying a lot of different things, but none have been helping.  He wants to exhaust all other options before we move on to TPN (total parenteral IV nutrition) which is always a last resort because it comes with many risks and complications, including sepsis (blood infections).

I’m to try an amino acid called glutamine for 4 days to see if it will help the mitochondria in my GI tract.  And we’re also trying another tube feeds formula since the elemental one wasn’t tolerated well last week.

If these last things don’t help, then we’re moving on to TPN.  I’ll have to get a central line placed and be admitted for the start of it for monitoring, daily lab work, and hourly blood sugar checks.

I’m so thankful for my GI specialist!  He’s even trying to get in touch with my mito specialist in San Diego.

Today I saw my pain dr.’s colleague, and she is so sweet! 🙂  I’m so glad she can keep in touch with him.  The whole pain center misses him a lot!  If I have to start TPN, I’ll be seeing the inpatient pain service at OHSU to receive ketamine infusions for CRPS pain control.  The CRPS has been flaring up because I’m not getting enough nutrition.  I’m also dealing with daily headaches and low blood pressure again from lack of food..

On top of all this, two weeks ago I started dealing with forceful coughing bouts to the point that I gag and retch. :/  I’m not sick, though.  We’re not sure if something lung-related is going on now.  See how bad mito is? 🙁  I emailed my sleep dr. today to see if he can refer me to pulmonology.

Next week, I will be getting my j-tube changed yet again to a different-sized mic-key button.  And I also have a follow-up with cardiology to go over the holter monitor results.

I continue to press on—the Lord’s got this! 🙂  And like always, He carries me through the roughest of times.

Post written byKerissa

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