Sad news

Kerissa • September 5, 2014

Hi everyone,

Thank you so much for your prayers and support!  It means a lot to me.  I am doing a little better than before.  After I wrote my previous post, I only had to go back to the ER one more time (that was a total of 3 trips to the ER and 1 urgent care visit in less than 2 weeks….).  The GI dysmotility got pretty bad, and I was in a lot of pain.  So Surgery told me to go to the ER to check for obstruction.  Thankfully, that was not the case, but the x-ray results did show that I was very backed up. :/  The doctors ordered more fluids, blood work, and IV meds, and I was able to go home with an updated medication regimen about 6 hours later!

Today, I saw my pain dr. because the CRPS burning pain has been so very severe in my hands.  I have to hold an ice pack at night because my hands over-heat and burn like crazy!  They’ve been flaring up because I had so many IVs and blood draws the last several weeks, and needles always make things worse.  My pain dr. ordered an IV lidocaine drip combined with ketamine and magnesium which will be done on Oct. 8th.  So far away because he’s booked out.. :/  Hopefully there will be a cancellation soon!

To my great sadness, Dr. S told me that he is leaving OHSU the end of October and moving to Washington to practice at the University of Washington Medical Center beginning in December.  I wasn’t expecting this at all. :'(  I’m so very sad!!  It’s not because he doesn’t like OHSU anymore…he’s been here for 18 years.  And he likes change, so he made the decision a month ago.

He told me at least he’s not moving to Cincinnati or San Diego.  Washington is just a few hours away, and I’m not completely heartbroken because I get to see him up there.  But this news is still hard…change is hard.  I’ve been seeing him at OHSU for almost 4 years!  Out of all my doctors, he’s my favorite.

The next several weeks, I have many big follow-ups with Neurology, Surgery, GI, and Internal Medicine.  So I may not be able to update much.

Also, next Friday and Saturday, my parents, sis, and I get to attend a two-day mitochondrial biology conference presented by Seattle Children’s Research Institute!!  Many mito specialists from across the US will be coming to speak to families and doctors.  I’m so excited!  The second day is a family day where you can meet other families with mito.

P.S. My etsy shop is open!  Check it out.  5% of profits will go towards MitoAction and mitochondrial disease research.  And the rest will be for all the increasing medical bills I have!

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