Good news and bad news.

Kerissa • November 21, 2014

Hey friends,

We got the CT scan results yesterday!  The images showed that I had something called Buried Bumper Syndrome (a rare complication with feeding tubes)….basically, the balloon on the j-tube (which is inflated with 1 ml of water to hold it in place) got stuck in my abdominal muscle.. :-O  No wonder I am dealing with pain and spasms!  So my GI surgeon’s office got me in that afternoon.  I’ve been having appointments every day….I’m tired to say the least.  My surgeon pulled the tube out and replaced it with a temporary balloon-less tube to let the area heal.  And she’ll later switch it to a different size in 3 weeks.  We’re still not sure if this will resolve all issues as my GI specialist said there may be more than one thing going on, including the motility issue.  But at least we can take care of this specific problem now.

Because I’m losing weight again, my GI dr. is going ahead and starting me on an elemental tube feeds formula which is more broken down and usually easier for patients with dysmotility to tolerate.  I see him again in 12 days!

Today I had urodynamic testing (super thankful that’s out of the way!), and the results aren’t good..  My nervous system is not working well at all, and she thinks this is from a cerebellum issue and/or a spinal cord problem (which my mitochondrial specialist suspects as well when I saw him back in June).  My specific bladder issue is hard to treat, but she is starting me on a medication….sometimes it works and sometimes it doesn’t.  If it doesn’t help, she’ll re-evaluate and go up the ladder from least invasive to invasive.

Now for some good news—more of my muscle was found which means the mitochondrial DNA testing can be started as soon as my insurance approves it!  If all that goes well, I have a tentative appointment with my mito specialist in San Diego on January 20th!

The first week of December, I have GI, an appt. with my pain dr.’s colleague, and physical therapy.  So I will be enjoying next week off!

Have a blessed Thanksgiving next week!

Love,
Kerissa

October prayer request

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. ❤️

Thank you! (+ a prayer request)

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

Praises & Prayer Requests

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