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)!!

Letter to my GI specialist 💚

By Kerissa Lee • March 31, 2026
Dear Dr. Phillips, There aren’t enough words to express how thankful I am to have had such an amazing GI doctor like you these past 13 years. I think of all the hard challenges that have happened starting at age 20 and beyond: experiencing GI dysmotility, not being able to eat “normal” foods without terrible abdominal pain/distention, only tolerating soft consistencies like baby food pouches (which was not fun as a 22 year old!), needing an NJ tube placed down my nose, having a jejunostomy tube surgically placed, then no longer tolerating tube feeds, dropping down to 77 pounds, getting admitted the day after Christmas to start TPN, being surprised by the extremely high copper levels on my liver biopsy and starting treatment for that, going through septic shock which caused ischemic hepatitis (remember when my liver function test was 1674!), having sepsis 5 other times from multiple central lines and ports, requiring urgent surgery to remove my gallbladder, needing D10 added to my IV fluids for numerous mitochondrial crashes, and much more. Through all the highs and lows, you were there for me, and I truly feel like I hit the “doctor jackpot” to have had a GI specialist as caring, compassionate, knowledgeable, and kind as you. I shed quite a few tears to my chagrin at my last in-person appointment with you in February 2026, and I still do as I reminisce and write this letter. But, they aren’t just tears of sadness. They are also tears of gratitude—I know this journey would have been much more difficult if I didn’t have your wonderful care and support all these years. I’m so happy that I was able to get off of TPN back then after 5 years of being on it. Not only that, but I’m so thankful that I can eat orally to my heart’s content without pain and abdominal distention. I know that’s in part due to you, so thank you. From the bottom of my heart, thank you so very much for caring for me. I will never forget you, and I wish you all the best as you start your retirement. :’) With immense gratitude, Kerissa

J-tube update

By Kerissa Lee • March 17, 2026
"God is always doing more than we know, working toward a good we will one day rejoice in." -Lysa Terkeurst

Please pray ❤️

By Kerissa Lee • March 7, 2026
Hi, friends, I would really appreciate prayer. Some of you already know this, but at the end of January, I started dealing with an abdominal abscess right next to my j-tube. I looked back through my records, and that was my 6th abscess. :( Since then, it’s sadly been one issue after another. I won’t go into all that has happened, but I’d especially love prayer for my j-tube site. After the abscess, I had my tube changed to a new one on 2/27. The surgery nurse practitioner decided to try the next size up to see if it could possibly decrease some of the leakage, but unfortunately, that was the wrong decision. It’s too large, so now the site is leaking tenfold compared to my previous size. The small intestinal fluid that keeps leaking out around the tube is full of acid which is burning my skin and making it raw. 😭 If you want to know what it feels like, imagine having a bad burn on your skin…then, on top of that, imagine acid being poured onto the burn every hour continuously. That’s how much pain I’ve been in, and I haven’t been able to sleep very well until after 6:30-7 AM each night because the burn is so intense! :’( I could cry, and I have—that’s how bad the pain is… I would show you a picture of the site but it’s not pleasant. 🥺 I’ve been emailing the nurse practitioner every single day, asking to have the tube changed back to the previous size. She hasn’t been helpful. I’ve tried all of her recommendations, but they aren’t fixing the root cause. I had to get an x-ray with contrast earlier today to check tube placement. If she does eventually agree to have the tube changed, I don’t know how I’ll bear the pain of the procedure… Remember, they don’t use sedation for these procedures (my GI specialist is shocked they don’t!), and even though I’ve been asking for lidocaine to be injected for past tube replacements, how do I bear to have needles pushed into such raw tissue?! 😭 Please pray that I will be courageous and strong in the Lord. I think of the verse from Philippians 4:19, and it’s comforting: “And my God will supply every need of yours according to his riches in glory in Christ Jesus.” He will grant me the peace and strength I need to be brave. His grace is sufficient. ❤️