So much to process.

Kerissa • March 25, 2017

“Sometimes when we get overwhelmed

we forget how big God is.”

-A.W. Tozer

Hey everyone,

I’m more than halfway through my 5 weeks of IV iron infusions….but I’m still very exhausted. I woke up at 4 pm today because yesterday was so rough—my blood sodium and magnesium levels were pretty low which made me so weak. My blood sugar yesterday also dropped…..my hands shook terribly from it, and I was nauseated. Because I had to wake up early for an appointment, the mito fatigue made me not be able to empty my bladder numerous times throughout the day which was just plain agony…. TMI, but I’m just being real here. This is just a little of what happened yesterday.

My achy back and headaches are sadly no better, either, and I still have to take my really strong pain medication every single day that my palliative care dr. prescribes. I wish I didn’t have to because the side effects make my muscles heavy and everything gets so loud to my hearing.

I’m faithfully taking the CBD oil, too, but I haven’t noticed a single thing yet. Will be having another phone appointment with the San Diego naturopathic physician sometime in the future to tell her how it’s going.

I had a follow-up with my palliative care doctor recently, and I learned that he is leaving OHSU in June after working there for 20 years!! I’m so sad that he’s leaving, but I’m happy for him as well—he will be working for a very famous surgeon/writer in Boston. His name is Atul Gawande, and I have read many of his books because they are so good!! My palliative dr. will be the director of the hospice/palliative program there. He wasn’t expecting to be chosen, but I’m not at all surprised because he is so very compassionate, reflective, and kind. I get to see him one last time in May.

My monthly GI appointment was last week. I lost weight, so I have to try and increase my tube feedings even more….he ordered a feeding pump backpack for me so that I can do tube feeds when I go out and not just do it when I’m at home. If I can’t maintain my weight, my GI dr. said he’ll have to increase the calories in my IV nutrition when I see him again next month.

I also saw my pulmonary dr. afterwards. He still thinks my chronic cough is upper airway-related versus lung-related, so he’s glad I see my ENT doc on April 10th. My respiratory muscle strength is stable, so that’s a praise.

My kidney/bladder ultrasound that I had recently shows that the pressure from my neurogenic bladder causes my right kidney to get dilated. I saw my urologist yesterday to follow-up on this, and she stated with great concern that I’m right on the edge for my bladder to stop working.. This means I will have to have a major surgery done to protect my kidneys…..she doesn’t know exactly when I will need this. I hope and pray it happens years from now or never at all..

After waiting 2 whole weeks, my bone density results finally came back. Sadly, it shows that I have osteopenia (soft bones/bone loss)….no wonder I fractured a rib from coughing! I’m only 24, and I have osteopenia…. But it’s due to a number of factors. It’s because I’m small, on IV nutrition, not active from the muscle weakness/fatigue, etc. My PCP wants my GI dr. to greatly increase the calcium in my IV nutrition, for me to keep faithfully taking my vitamin D, and I also might need IV calcium infusions and/or liquid calcium through my j-tube.

Mitochondrial disease is simply horrible. It affects too much. I look so normal on the outside, and yet, on the inside…

Sometimes, everything seems so hopeless and gets more and more discouraging with bad news on top of bad news…..but Jesus is my Hope and Strength. He will ALWAYS be!! He knows what I’m going through. He cares. So I won’t let all this get me down!

John Calvin once wrote, “It is the word of God alone which can first and effectually cheer the heart of any sinner. There is no true or solid peace to be enjoyed in the world except in the way of reposing upon the promises of God.” So encouraging!

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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! 💚 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! 🥹 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)! 🥰 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..

August 6th Surgery Prayer Requests 💚

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. 💚 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. 🥺 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