15 Years

Kerissa Lee • July 14, 2025

"We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope.."

Romans 5:3-4




Hi friends,


I just wanted to let you know that my “consent call” with the UDN genetic counselor went well a few weeks ago. She explained what the process is like for those who are accepted into the study. The first step is an appointment with a biochemical geneticist at UW, but because I don’t currently need additional tests (like a muscle biopsy), this appointment can happen via telemedicine. That will be on July 21st! Once I have that visit, he will form a plan and discuss it with the UDN principal study investigators. :)


I unfortunately had to reschedule my tube change last month because my muscles were still feeling pretty weak from the moderate “mito crash” that happened in May, so Lord willing, it will now be replaced on July 25th. Would appreciate your prayers once again as these tube changes are always so painful.. 😥


I’m bummed to say that I’m still experiencing quite a bit of hip pain (despite weekly chiropractic adjustments and physical therapy sessions), so my PCP ordered an MRI arthrogram of the hip. Because an arthrogram is a full procedure with fluoroscopy and a gigantic needle (😭), they’re quite booked out and it’s not until late August. 😞  An arthrogram vs. a standard MRI will show us if I re-tore my left hip labrum.. In addition, my right shoulder joint continues to cause significant pain as well as clicking/popping sounds, so my doctor ordered an MRI of my shoulder.. Hopefully they can both be completed at the same time..


Some good news is that the rheumatologist I’ve been waiting 5+ months to see had a cancellation, so I can now see him later this week instead of the end of August! 😍 What a blessing from the Lord.   Please pray for wisdom and that this doctor will have a clear picture of what could be causing all this joint pain..


I’ve been really reflecting these last several days because this month marks 15 whole years since this medical journey started. Somedays it feels like a nightmare that I can’t wake up from, but other times, God’s peace and comfort is so evident, and he has lovingly been carrying me through the hardest trial of my life. I know the Lord called me specifically to this path, and in a way, it’s special to know that I can “share Christ’s sufferings” (1 Peter 4:13, Philippians 3:10). These 15 years have flown by but also often dragged as I wake up day after day fighting mitochondrial disease and the other diagnoses. I wish this long journey could end soon. But Randy Alcorn wrote this recently, and I feel like it was meant just for me (especially the last sentence):


The Apostle Paul says, “I’ve learned the secret of being content in any and every situation…” (Philippians 4:11-12). Notice he doesn’t say, “One day God sent an angel to teach me how to be content.” No, he had to learn it over a long period of time. One reason God allows times of suffering in your life is to move your heart more completely to Him and to teach you His sufficiency. ❤️


God has definitely been showing me that he is sufficient in all things—in the good times and bad. Through the next 15 years, I pray that I will keep leaning fully on him and remember that “for those who love God all things work together for good, for those who are called according to his purpose” (Romans 8:28).


To close, I read this beautiful poem online the other day and wanted to share it because it’s so encouraging. The Lord has been so faithful and gracious through this long journey. I know he is with me and for me! 🥲  Thank you so much for praying for me these last 15 years—you truly help bear this burden! 💚


“Making Whole” by Rachel H:


Our God is a good gardener,

Even when it hurts to grow.

Every day He works in our lives

In ways we will never know.


He gets up early in the morning

To tend to the budding shoots

And water the fertile ground

That is slowly bearing roots.


His timing is held carefully

In His soil-stained hands.

He knows when to sow the seeds

And when to reap the land.


But sometimes we can doubt

If our God is really good

Because He gardens us in ways

That we don’t think He should.


When He prunes our dormant branches

Or pulls weeds from the ground,

We worry that this rooting out

Will last the whole year round.


But the gardener is patient,

Returning each morning with care.

Because He knows the kind of fruit

His plants will one day bear.


Just know a time will come

When our gardens will come alive,

And everything that was cut back

Will soon begin to thrive.


Our God is a good gardener,

Even when it hurts to grow.

Every day He works in our lives

In ways we will never know.

J-tube update and a prayer request for my uncle ❤️

By Kerissa Lee • April 16, 2026
Hi, friends, I just wanted to write an update on what’s happened since my last post. Sadly, the 2 different tube changes haven’t helped, and there’s still so much leaking around the tube. 🙁 The abdominal pain was decreasing each day, but for some reason, it has ramped up again and has been steadily getting worse the last several days. The pain is sharp and throbbing—it also hurts to use my abdominal muscles. I saw my primary care dr. this past Friday, and he ordered an urgent CT scan. I had that done this past Monday, and the scan shows that the balloon on the tube is lodged in my abdominal wall (it’s called buried bumper syndrome). 😥 So painful, but I’m thankful for answers! I actually had this issue many years ago, and usually, changing the tube size helps. But we’ve already tried 2 different tube sizes in March which hasn’t helped. I don’t know if the tract got damaged or what.. My PCP messaged the surgery team twice now, but they’re not responding still. Ever since my general surgeon left OHSU 2ish years ago to practice in New Orleans, it hasn’t been a good transfer to a different team. 😢 In addition, the CT scan also revealed that I have ground glass opacities in my left lung, so I have to go through work-up for that as well to figure out the cause.. Aside from these latest issues, I’m praising God that my mitochondrial disease has been stable still!! So thankful for God’s grace and faithfulness. The day I got my CT results, I read this excerpt below from one of Joni Eareckson Tada’s daily devotionals, and it was like the Lord was speaking right to my heart. I hope it’s an encouragement to you. ❤️ “Present pain and afflictions tend to heighten future joy. When is peace the sweetest? Right after the conflict. When does a cold drink taste best? When you’ve become very thirsty. When do you appreciate rest the most? After hours of hard labor. When is joyful company most pleasant? After enduring long days of loneliness. The truth is, our recollection of past sufferings may one day enhance the bliss of heaven. Eternity with the Lord will be so much more heavenly to those of us whose faith has been tested, battered, and tried, time and again.” -Joni Eareckson Tada One more thing.. I’d really love prayers for my uncle (my dad’s older brother). He’s been very sick in the neuro ICU with serious issues. First pneumonia, then bacteria in his spine which later broke his back. He had a major spinal surgery but still can’t move his legs. 🥺 On top of that, his kidneys started failing, so he had to be placed on continuous dialysis. He also had to be put on a ventilator due to fluid in his lungs. Then, he still couldn’t breathe well, so he had to get a tracheostomy tube placed in his neck. 🥺 Despite all this, he and his family are so strong and trusting the Lord which is a huge testimony to all of us and to the ICU. Could you please pray for peace, strength, and healing over his body? I know he and his family would be so grateful for your prayers. 💙 P.S. I wish I could show you my foster nephew’s sweet face in this photo from Easter Sunday! He is now 9 months old—the most precious and adorable little boy!! Our lives are so much sweeter with him in it. 🥹

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