Appointment updates.

Kerissa • November 13, 2018

Hey friends,

It’s been exactly 2 whole months since I last posted—I’m sorry I haven’t kept you in the loop lately!

In October, I had a tunneled central line infection (thankfully, it didn’t spread to my blood).  My central line site was really tender and oozing a little.  So my GI specialist quickly started me on a 10-day course of Doxycycline (a very strong antibiotic I’ve never taken before).

Well, 2 or 3 days after I started the antibiotic, I came down with a cold (an antibiotic side effect that can happen).  It took me more than 16 days to recover from just a simple cold. My neurologist explained that I’ll always have more severe symptoms with any kind of illness due to having mitochondrial disease.

I also found out that this class of antibiotics is on the “do not take” list for those who have mito because it “inhibits beta-oxidation and mitochondrial protein synthesis.” Not sure if that’s also why it took me so long to get better, but now we know that I should stay away from these specific antibiotics if possible.

In October, I also had a follow-up with my orthopedic hip surgeon, and it wasn’t the best news.  My hip is still not doing better, and I have a lot of scar tissue in the hip joint.  I continue to have physical therapy twice a week, and recently, I also had to get an ultrasound-guided hip steroid injection to soften the scar tissue and decrease the inflammation.  The doctor who did the injection felt a lot of resistance (due to the scar tissue) when he inserted the needle into the joint..

Several weeks ago, I had my first appointment with an OHSU endocrinologist.  She wanted to run a bunch of labs (I had to get 8 tubes of blood drawn) and have me undergo a cortisol stimulation test to rule out adrenal insufficiency.  If I have adrenal insufficiency, my doctor explained how that would be the answer as to why I went into septic shock in August.

Well, I had the test done last week, and the results show that I don’t have AI.  That is good news, but that also means we still don’t know why I went into shock..

Regarding the osteopenia, I see my endocrinologist again in March to get another bone density scan done.  The scan will show us if the osteopenia is stable or not.

Last week, I had 5 appointments which was so very tiring!  And this week, in addition to physical therapy, I have follow-ups with my urology surgeon and my pain doctor.

Here’s something nice to share.  I recently got a new wheelchair!  Same color because I love green.  But this frame was made with titanium (instead of aluminum) so it’s considered an ultra-lightweight chair!  The seat cushion is also much better than my previous one.  And, the whole chair was covered 100% by my insurance (it was over $8000)!  One sad thing is that they forgot to add “push handles” which is needed for whenever I don’t have the energy to wheel myself..  So, it’s being looked into.. :/

Here’s some more good news.  Regarding tube feeding, I use this elemental (broken-down) formula called Peptamen and then alternate that with an organic “nutrition shake” that contains fruits and veggies.  I always tolerate the organic one better, but it’s not covered by insurance because I could only get it from the store or Amazon.  Well, last week, we found out that my tube feeding company now carries the organic formula!  Isn’t that awesome!?

Anyways, if I don’t get a chance to update again before the end of the year, Happy Thanksgiving (and Merry Christmas)!!

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