So much to process.

Kerissa • March 25, 2017

“Sometimes when we get overwhelmed

we forget how big God is.”

-A.W. Tozer

Hey everyone,

I’m more than halfway through my 5 weeks of IV iron infusions….but I’m still very exhausted. I woke up at 4 pm today because yesterday was so rough—my blood sodium and magnesium levels were pretty low which made me so weak.  My blood sugar yesterday also dropped…..my hands shook terribly from it, and I was nauseated.  Because I had to wake up early for an appointment, the mito fatigue made me not be able to empty my bladder numerous times throughout the day which was just plain agony….  TMI, but I’m just being real here. This is just a little of what happened yesterday.

My achy back and headaches are sadly no better, either, and I still have to take my really strong pain medication every single day that my palliative care dr. prescribes.  I wish I didn’t have to because the side effects make my muscles heavy and everything gets so loud to my hearing.

I’m faithfully taking the CBD oil, too, but I haven’t noticed a single thing yet. Will be having another phone appointment with the San Diego naturopathic physician sometime in the future to tell her how it’s going.

I had a follow-up with my palliative care doctor recently, and I learned that he is leaving OHSU in June after working there for 20 years!!  I’m so sad that he’s leaving, but I’m happy for him as well—he will be working for a very famous surgeon/writer in Boston.  His name is Atul Gawande, and I have read many of his books because they are so good!!  My palliative dr. will be the director of the hospice/palliative program there.  He wasn’t expecting to be chosen, but I’m not at all surprised because he is so very compassionate, reflective, and kind.  I get to see him one last time in May.

My monthly GI appointment was last week.  I lost weight, so I have to try and increase my tube feedings even more….he ordered a feeding pump backpack for me so that I can do tube feeds when I go out and not just do it when I’m at home.  If I can’t maintain my weight, my GI dr. said he’ll have to increase the calories in my IV nutrition when I see him again next month.

I also saw my pulmonary dr. afterwards.  He still thinks my chronic cough is upper airway-related versus lung-related, so he’s glad I see my ENT doc on April 10th.  My respiratory muscle strength is stable, so that’s a praise.

My kidney/bladder ultrasound that I had recently shows that the pressure from my neurogenic bladder causes my right kidney to get dilated.  I saw my urologist yesterday to follow-up on this, and she stated with great concern that I’m right on the edge for my bladder to stop working.. This means I will have to have a major surgery done to protect my kidneys…..she doesn’t know exactly when I will need this.  I hope and pray it happens years from now or never at all..

After waiting 2 whole weeks, my bone density results finally came back.  Sadly, it shows that I have osteopenia (soft bones/bone loss)….no wonder I fractured a rib from coughing!  I’m only 24, and I have osteopenia…. But it’s due to a number of factors.  It’s because I’m small, on IV nutrition, not active from the muscle weakness/fatigue, etc.  My PCP wants my GI dr. to greatly increase the calcium in my IV nutrition, for me to keep faithfully taking my vitamin D, and I also might need IV calcium infusions and/or liquid calcium through my j-tube.

Mitochondrial disease is simply horrible.  It affects too much. I look so normal on the outside, and yet, on the inside…

Sometimes, everything seems so hopeless and gets more and more discouraging with bad news on top of bad news…..but Jesus is my Hope and Strength.  He will ALWAYS be!!  He knows what I’m going through.  He cares.  So I won’t let all this get me down!

John Calvin once wrote, “It is the word of God alone which can first and effectually cheer the heart of any sinner.  There is no true or solid peace to be enjoyed in the world except in the way of reposing upon the promises of God.”  So encouraging!

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. ❤️