Worsening problems.

Kerissa • December 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.

By Kerissa Lee October 19, 2025
Dear friends, At the beginning of October, I started taking a new medication for the autoimmune disease. I thought I was tolerating it just fine, but after several days passed, I began experiencing nausea, loss of appetite, weakness all over, and increased pain. 🙁 It’s like I’m experiencing another “mito crash.” I found out that this specific lupus medication affects mitochondria. That is, it causes an overproduction of reactive oxygen species (ROS). This, in turn, causes cell damage and oxidative stress. I sure wish the rheumatologists would have known about this before prescribing. But I have to remember that Mitochondrial DNA Depletion Syndrome is rare, and they’re not “mito experts.” Anyways, the last time I felt like this was back in May.. I’m so grateful to God that I haven’t needed to be hospitalized from this, but at the same time, I’m also sad that this happened at all, especially because I had such a nice stretch of stable health. I’d really appreciate your prayers, that this muscle weakness can resolve soon, and that this increased pain all over will get back to my baseline. Every time I have a “mito crash,” it feels like I’m fighting the flu which always sucks. The pain has been hard to bear. And whenever I’m in the thick of it, it’s difficult to remember that this too will eventually pass. 😢 Pray that I will endure and follow Jesus’ example like this passage from Hebrews 12:1-2– “Let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross...” Thank you all so much for praying for me. ❤️
By Kerissa Lee October 4, 2025
"Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness." James 1:2-3
By Kerissa Lee September 3, 2025
"The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness." Lamentations 3:22-23