Under the weather

Kerissa • December 8, 2016

Hey friends,

Just a short update. Since the day after Thanksgiving, I’ve been sick with low-grade fevers, a painful sore throat, swollen glands, a barking cough day and night, and terrible fatigue. The doctor thought at first that it was a bad virus, but now he believes I have a bacterial infection in my throat (basically “strep,” but caused by a different bacteria…not the streptococcal bacteria). He said I’m immunocompromised….this is because of mito. So he prescribed a week’s worth of antibiotics and codeine cough syrup. Still not feeling any better yet, but it might take several more days.. I’ve been completely exhausted. I just don’t have enough energy in the first place to fight these types of things.

I had a follow-up with my GI specialist last week. The end of this month marks 2 whole years of being on TPN (IV nutrition). So hard to believe. We talked about taking a TPN break, but after much discussion, it’s just not really possible at this point because of my bad hypomagnesemia (he said “I’m the black hole of Magnesium….”), low blood sugars, continued GI dysmotility, and other problems from mito. I’m disappointed but will keep persevering and trusting in God’s sovereignty.

I’m really trying to increase my tube-feeding and not just do it one time a week… If I can eventually receive a large enough volume total each day, then we can maybe talk about a TPN break!

I had a bilateral lumbar sympathetic nerve block scheduled this afternoon, but I had to cancel it because I’m coughing way too much. God in His providence worked things out, tho! My pain dr. had to reschedule anyways, and it got moved to next week. So thankful I don’t have to wait many more weeks for it to happen.

In addition to the nerve block, I have a lot of appointments coming up with Palliative Care, Neuro-otology, Internal Medicine, Nephrology, and Physical Therapy. I’ve had to cancel PT for 2 weeks now. My hip and muscles are all super weak from being sick…progress keeps getting set back. But I’m so grateful for my therapists who continue to work with me, despite my complex medical case!

Until next time! Have a wonderful and blessed Christmas, friends.

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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