Long overdue appointment updates.

Kerissa • July 29, 2015

Hello friends,

I’m sorry it’s been so long since I last updated. This month has been crazy full of appointments! On top of that, my older brother got hit by a car (not his fault) when he was riding his motorcycle on the way to his work two weeks ago. The Lord is so good—things could have been way worse. My brother was life flighted to one of the trauma hospitals in Portland, but we’re so thankful he didn’t have any severe internal damage. He did have a broken collarbone, 5 broken ribs, lung contusion, and other injuries.

It’s been really fun having him stay at our house to recover! We play games and watch a lot of movies together.

Anyways, here are some updates on my July appointments:

Cardiology- My cardiologist wants more salt added to my TPN for my low blood pressure and tachycardia. 11 or more grams to be exact! That’s a ton of salt but it’s needed for these heart issues. He spoke with my GI specialist. Unfortunately, adding that much salt would require a big increase in my IV fluids to balance everything out, but I can’t tolerate more than a liter at a time because of my neurogenic bladder. Soo, my GI specialist is conferring again with my cardiologist to see if I can instead crush salt tablets and flush them through my jejunostomy feeding tube.

Sleep Medicine- July 2nd I had my 4th sleep study. They put BiPAP on me. Everything went well until 5 AM that morning when I woke up with horrible stomach pain and distention! Apparently, I started experiencing something called aerophagia, probably due to a weak esophagus. BiPAP air went down my esophagus and into my stomach because the valve covering the esophagus didn’t close fully. We are still going to try BiPAP again at home, starting this coming Monday. Please pray I can tolerate it (there aren’t really any other options for my sleep apnea). My sleep dr. also ordered my 2nd pulmonary function test which was completed yesterday.

Gastroenterology- My blood copper level is still dropping dramatically by the month, even though I’m receiving 6x the normal amount in my TPN. My GI dr. said this shouldn’t be happening. My ceruloplasmin level (related to copper) is also low. He’s now running more tests and checking for another bad genetic disease. I hope I don’t have it. He also plans to add more dextrose (sugar) to my TPN because I’ve been dealing with frequent low blood sugars…it dropped to 54 at one time. I see him again in less than 2 weeks.

Rheumatology- Yesterday my rheumatologist took a very detailed history of all my symptoms to try and get to the bottom of these daily fevers I experience. He ordered more genetic testing. He wants to see if I have a genetic Periodic Fever Syndrome.

Hematology- Today I saw my hematologist. If that copper genetic disease comes back negative, he thinks my low copper issues are related to my Mitochondrial DNA Depletion Syndrome. Copper is vital for proper function of Complex IV in the mitochondrial electron transport chain. He also ordered more labs to check my red blood cells and make sure I don’t have the blood disease that came up on my Whole Exome Sequencing results.

Thank you so much, Mrs. E, for this beautiful bouquet of flowers! They make me smile, and I look at them often as I spend a lot of time in the living room. That was so thoughtful of you to think of me since I couldn’t partake of your yummy dinner with my family. Love you!

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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