Concerning issues.

Kerissa • August 10, 2017

“But I will call on God, and the Lord will rescue me. Morning, noon, and night, I cry out in my distress, and the Lord hears my voice. He ransoms me and keeps me safe from the battle waged against me…”

Psalm 55:16-18a

Hello friends,

Wow, where has the time gone?? I haven’t blogged here in almost a whole month!

It’s been a busy summer as my parents and I recently got back from Seattle. They had a wedding to go to, so I wanted to come along so that I could see my pain dr. at UWMC.

Oh it was so good to see him! He will always be my favorite doctor, and when we said goodbye at the end of the appointment, he kissed me on the head and hugged me tight. I miss him so very much and wish he still worked at OHSU. But I’m so thankful he’s only one state away and that I can still see him at least once a year.

me and my pain dr.he’s the best!

He gave some good pain management recommendations for all the chronic pain, and hopefully, my pain dr. here or my palliative ANP can start me on one of them soon. My next appointment with my local pain dr. at OHSU isn’t until the 29th, so the palliative care team is trying to get me in soon.

The pain has been really severe lately, and the hot weather we’ve been having definitely hasn’t helped. It causes my feet to get really swollen and red. During the Seattle trip, my legs ached terribly and my feet burned more than usual because I was so exhausted from not sleeping well, needing to wake up “early,” etc. When I’m tired, all the pain and other symptoms worsen.

I got my blood Carnitine levels back, and my mitochondrial geneticist in Pasadena said they’re quite low, so he wants me to have 2 grams of IV Carnitine added to each of my nightly TPN (IV nutrition) bags. He said it may help some of the pain and weakness that I experience. My GI dr. recently put in the order for this to be added.

I saw my physical medicine doctor, and he ordered a lightweight thoracic spinal brace for my achy back pain and muscle weakness. It’s $800-$900 out of pocket (!!), so we’re trying to get it covered by my insurance. It’s taking a long time because the company that offers these types of braces wants to see my medical records first.

My physical medicine dr. is really concerned about my osteopenia. I shouldn’t have that at my age. So he wants me to work up to standing and weight-bearing a total of 3 hours a day by the end of the year. I’m only awake 6-7 hours a day! :/ But he still wants me to try so that this doesn’t turn into osteoporosis at so young of an age.. I had a follow-up with my PCP, and she talked about something called SMART goals ( S pecific, M easurable, A ssignable, R ealistic, and T ime-based )… So she told me to try working up to 2 hours first.

For the past 2 months or so, I’ve also been experiencing a new neurological symptom that often happens during the night, and it seems to be getting worse. So before ordering more tests, my neurologist first wants me to send her a video of what it looks like/when this happens. Hopefully I’ll know soon what’s causing these neuro episodes..

On top of all this, something concerning has been going on with my sister. I can’t share many details as we don’t know much ourselves, but her health has declined, starting 2 months ago (it doesn’t look like mitochondrial disease, though).. It’s so hard to see my sister go through this new health trial (she’s been experiencing puzzling symptoms), and I keep praying that it’s nothing serious. But above all, I pray that my faith (and my family’s) will remain strong in spite of this concerning and stressful time. She’s been having tests done, and on Friday, she sees a specialist.

I’ve been reflecting a lot on the verses shared above. They just comfort me so. It’s encouraging to know that we can cry out to God in our distress any time of the day, whether it’s during a hard appointment, or when the pain is severe, or when we seem to be stuck in the unknown.. And through it all, the Lord hears our voice! He doesn’t turn away but wants to hear about all our troubles/difficulties. It’s especially encouraging and refreshing to know that the Lord will rescue us and keep us safe from any battle that comes our way.

This has just been a really hard journey, and it seems like the battle will never end. But the Lord will always carry me and my family through this. He is so faithful and will never forsake us.

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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. ❤️