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. πŸ˜” 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).πŸ˜•


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. πŸ₯Ί 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. πŸ’—


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

Surgery Update 😊

By Kerissa Lee • August 21, 2026
Dear friends, I just wanted to thank you all so much for praying for me during my abdominal surgery on August 6th! πŸ’š All of your messages/emails really encouraged my heart! If you missed my previous post, I had to have an unexpected surgery to take down the jejunostomy tract and repair an enterocutaneous fistula (a rare complication from having a j-tube for 12 years). I truly felt your prayers, and the Lord answered so many of them as well! πŸ₯Ή My surgeon only had to remove about 1 1/2 inches of my small intestine which is great news! I was in the hospital for 4 days because my blood pressure was low and pain control was rough (it’s a long story, but pain management is complex due to a specific medication I take daily at home..). But aside from that and having an allergic reaction to the surgical glue, I’ve been healing well. Thank you again for praying!! God has been so faithful throughout this journey. I got a visit from my sweet foster nephew when I was in the hospital (2nd picture)! πŸ₯° I can’t wait until I can show you his face—he’s so adorable. 🩡 I’ve mentioned this before, but an important medication I take causes severe insomnia (still not falling asleep until anywhere between 3 AM-9 AM). 😞 But I saw my naturopath this past Monday, and she’s going to treat me for suspected cortisol spiking up during the night (which disrupts the body’s circadian rhythm). I’m thankful for the wisdom God gives her, and I’m excited to see if this treatment will help! It will take 6 weeks to see if there’s any benefit, but I first have to specially order it.. ο»Ώ

August 6th Surgery Prayer Requests πŸ’š

By Kerissa Lee • August 6, 2026
"God is our refuge and strength, a very present help in trouble." -Psalm 46:1

Another surgery 😞

By Kerissa Lee • July 25, 2026
Hi, friends, I thought I wouldn’t be posting for a while since I’ve been doing really well, but I’ve hit a bump in the road again and would appreciate your prayers. πŸ’š This past Tuesday the 21st, after nearly 12 years living with it, I had my jejunostomy tube removed completely. I thought it was going to be a simple process and that the stoma (hole) would close quickly within 30 minutes like they said. That didn’t happen, though, as the stoma started draining a ton! I couldn’t even leave the lobby and had to go back up to the clinic on the 8th floor to have an ostomy bag placed to collect all the small intestinal digestive juices that continually drained. Unfortunately, I’m experiencing a very rare complication called an enterocutaneous fistula. πŸ₯Ί I’m disappointed this is happening, but I’m not exactly surprised since my whole medical case with Mitochondrial DNA Depletion Syndrome has been rare from the very beginning.. I also don’t heal well due to connective tissue problems from Ehlers-Danlos Syndrome (case in point: my port site issues back in May when I had to have a new one surgically placed on the other side of my chest).. 😞 The clinic told me to keep emptying the ostomy bag and monitor the output. It wasn’t a fun 2 days. This whole process has definitely made me so grateful to God that I’ve never needed something like an ileostomy! TMI, but I lost almost a whole pound of fluid because so much was gushing/spurting out of the stoma every time I ate or drank. Losing so many electrolytes, I started experiencing symptoms of dehydration—weakness, high heart rate, and headaches. So yesterday, I had to go back and see the surgery resident who basically placed another j-tube (it was so painful again!). 😭 This is a temporary “plug,” and I’m bummed to say that I have to go to the operating room to have the jejunostomy tract taken down and the fistula repaired. This surgery will be happening as early as next week (it depends on my surgeon’s schedule).. She said it will be complex, especially because adhesions (scar tissue) form when a person has multiple abdominal surgeries.. I lost count what number this surgery/procedure will be, but I do know I’ve had more than 20! 😞 I know God is with me wherever I go and will supply me with the strength to endure yet another surgery like he always does. But, I’m still sad that I have to have more incisions added to my body. I shared the lyrics to this song before on an old blog post (the song is called It Is Well With My Soul by Matt Redman), but it immediately came to mind again when I was thinking of scars. As the song below said, it’s a reminder to me that my scars can be a testimony to others of God’s grace in my life and how he has brought me through every single pain and sorrow. In the Bible, I’ve always thought it’s so neat that Jesus still had his scars after he rose from the dead—he had a new body, and yet, his scars were still visible. ❀️ Our scars are a sign of grace in our lives Oh Father, how You brought us through When deep were the wounds And dark was the night The promise of Your love, You proved Now every battle still to come Let this be our song It is well (it is well) With my soul (with my soul) It is well, it is well with my soul