Mito crash update (with additional prayer requests)

Kerissa Lee • June 2, 2025

I, the LORD your God, hold your right hand; it is I who say to you, "Fear not, I am the one who helps you."

Isaiah 41:13



Hi, friends,


I was so excited to share that after 3 weeks fighting this latest “mitochondrial crash,” I had improved quite a bit, but yesterday, the nystagmus suddenly returned, and it was so rough that I was very nauseous last night.. 😞 Today my eyes are droopy again. Not sure what’s going on and if I’m having a mini relapse? 😢


Still receiving the IV dextrose infusions every day, and I pray this is just a tiny setback with a better day tomorrow.. Mitochondria use glucose to turn it into ATP (energy), and during these flares, my body needs so much dextrose (sugar) infused straight through my port which goes directly to my heart.. I have a sweet tooth, and I was telling my mom how funny/sad it is that I can’t just eat sweet things to keep these mito flares away. 🫩


I’m thankful IV dextrose is helpful, but it doesn’t come without its risks because bacteria feeds off of sugar, and if it gets into my port, then it can cause a bloodstream infection and sepsis (which I’ve had 6 times).. Hard to believe this year marks 10 years with a central line/port.  For almost half of that time, I had to receive total parenteral nutrition (IV nutrition) due to significant GI dysmotility from the mitochondrial depletion.  I dropped down to 77 pounds because it hurt so much to digest food and my stomach always got super distended. But by God’s kindness, I’m so thankful that I’ve been able to eat enough orally since 2020. ❤️


Would appreciate your prayers for this coming Friday as I will be transitioning to a different pain medication. I’ve been on my current one for probably more than 6 years. But it’s not the safest, and I’ve needed especially high doses these last 6 months from the numerous mito crashes and severe leg pain. I so wish I didn’t need strong pain meds, but there’s no cure for Mitochondrial DNA Depletion Syndrome, and I’ve exhausted all other options. 😔 I’m on a ton of supplements for pain and have even tried numerous natural therapies. I used to have a spinal cord stimulator (SCS) in my back that helped disguise the pain signals in my legs, but it’s 100% contraindicated in my case due to the port. If I had a port infection, bacteria likes to stick to metal in other parts of the body, and a SCS infection would cause paralysis since the SCS device is placed near the spinal cord.


Anyways, I tried this pain medication they want me to take back in 2016, but it landed me in the ED due to vomiting, weakness, and a high white blood cell count. I had to be admitted for all that. My doctors think it was just an extremely weird phenomenon because they’ve never heard of those side effects from this medication. So we’re going to try it again but introduce it in micro doses the next several weeks. Could you please pray those adverse side effects won’t happen again and also that my body doesn’t go into withdrawal (especially because I’ve been on this current medication for soo long).😕


If this is a successful induction, it would be amazing because it’s very safe!


This coming Friday, I also have to get my j-tube replaced which I’m dreading. It’s a horribly painful procedure, and they don’t provide sedation for it. 🥺 When my tube was replaced 2 or 3 years ago, the surgeon had difficulty removing it, so she accidentally yanked the whole tube out without deflating the “balloon” portion of the tube. I burst into tears and bled a lot! I’ve had so many traumatic medical experiences. 😭 This time, it will be done with a new specialist because my surgeon transferred to her hometown in New Orleans. Could you please pray I’ll have courage, that the tube change will go smoothly, and the area can be numbed well?


Thank you all for your faithful prayers. So grateful to have prayer warriors like you—your love and support always encourages me. 💗


P.S. This is another card design that will eventually be sold in my shop! Isn’t the verse from Psalm 59 so comforting? 🥰  The shop isn’t open yet, but I hope it can be soon once I get over this flare. ❤️

J-tube update and a prayer request for my uncle ❤️

By Kerissa Lee • April 16, 2026
Hi, friends, I just wanted to write an update on what’s happened since my last post. Sadly, the 2 different tube changes haven’t helped, and there’s still so much leaking around the tube. 🙁 The abdominal pain was decreasing each day, but for some reason, it has ramped up again and has been steadily getting worse the last several days. The pain is sharp and throbbing—it also hurts to use my abdominal muscles. I saw my primary care dr. this past Friday, and he ordered an urgent CT scan. I had that done this past Monday, and the scan shows that the balloon on the tube is lodged in my abdominal wall (it’s called buried bumper syndrome). 😥 So painful, but I’m thankful for answers! I actually had this issue many years ago, and usually, changing the tube size helps. But we’ve already tried 2 different tube sizes in March which hasn’t helped. I don’t know if the tract got damaged or what.. My PCP messaged the surgery team twice now, but they’re not responding still. Ever since my general surgeon left OHSU 2ish years ago to practice in New Orleans, it hasn’t been a good transfer to a different team. 😢 In addition, the CT scan also revealed that I have ground glass opacities in my left lung, so I have to go through work-up for that as well to figure out the cause.. Aside from these latest issues, I’m praising God that my mitochondrial disease has been stable still!! So thankful for God’s grace and faithfulness. The day I got my CT results, I read this excerpt below from one of Joni Eareckson Tada’s daily devotionals, and it was like the Lord was speaking right to my heart. I hope it’s an encouragement to you. ❤️ “Present pain and afflictions tend to heighten future joy. When is peace the sweetest? Right after the conflict. When does a cold drink taste best? When you’ve become very thirsty. When do you appreciate rest the most? After hours of hard labor. When is joyful company most pleasant? After enduring long days of loneliness. The truth is, our recollection of past sufferings may one day enhance the bliss of heaven. Eternity with the Lord will be so much more heavenly to those of us whose faith has been tested, battered, and tried, time and again.” -Joni Eareckson Tada One more thing.. I’d really love prayers for my uncle (my dad’s older brother). He’s been very sick in the neuro ICU with serious issues. First pneumonia, then bacteria in his spine which later broke his back. He had a major spinal surgery but still can’t move his legs. 🥺 On top of that, his kidneys started failing, so he had to be placed on continuous dialysis. He also had to be put on a ventilator due to fluid in his lungs. Then, he still couldn’t breathe well, so he had to get a tracheostomy tube placed in his neck. 🥺 Despite all this, he and his family are so strong and trusting the Lord which is a huge testimony to all of us and to the ICU. Could you please pray for peace, strength, and healing over his body? I know he and his family would be so grateful for your prayers. 💙 P.S. I wish I could show you my foster nephew’s sweet face in this photo from Easter Sunday! He is now 9 months old—the most precious and adorable little boy!! Our lives are so much sweeter with him in it. 🥹

Letter to my GI specialist 💚

By Kerissa Lee • March 31, 2026
Dear Dr. Phillips, There aren’t enough words to express how thankful I am to have had such an amazing GI doctor like you these past 13 years. I think of all the hard challenges that have happened starting at age 20 and beyond: experiencing GI dysmotility, not being able to eat “normal” foods without terrible abdominal pain/distention, only tolerating soft consistencies like baby food pouches (which was not fun as a 22 year old!), needing an NJ tube placed down my nose, having a jejunostomy tube surgically placed, then no longer tolerating tube feeds, dropping down to 77 pounds, getting admitted the day after Christmas to start TPN, being surprised by the extremely high copper levels on my liver biopsy and starting treatment for that, going through septic shock which caused ischemic hepatitis (remember when my liver function test was 1674!), having sepsis 5 other times from multiple central lines and ports, requiring urgent surgery to remove my gallbladder, needing D10 added to my IV fluids for numerous mitochondrial crashes, and much more. Through all the highs and lows, you were there for me, and I truly feel like I hit the “doctor jackpot” to have had a GI specialist as caring, compassionate, knowledgeable, and kind as you. I shed quite a few tears to my chagrin at my last in-person appointment with you in February 2026, and I still do as I reminisce and write this letter. But, they aren’t just tears of sadness. They are also tears of gratitude—I know this journey would have been much more difficult if I didn’t have your wonderful care and support all these years. I’m so happy that I was able to get off of TPN back then after 5 years of being on it. Not only that, but I’m so thankful that I can eat orally to my heart’s content without pain and abdominal distention. I know that’s in part due to you, so thank you. From the bottom of my heart, thank you so very much for caring for me. I will never forget you, and I wish you all the best as you start your retirement. :’) With immense gratitude, Kerissa

J-tube update

By Kerissa Lee • March 17, 2026
"God is always doing more than we know, working toward a good we will one day rejoice in." -Lysa Terkeurst