Discouraging news.

Kerissa • July 3, 2018

Hey friends,

I got my MRI arthrogram results, and it shows that I do have a right hip labral tear. So now I’m waiting to hear from the surgery scheduler to schedule orthopedic hip surgery. Have to get insurance authorization first. Can’t believe I have to go through the same process once again—-hip surgery was incredibly rough…. I couldn’t bear weight on my affected leg for 2+ weeks, I had to use crutches, physical therapy twice a week was so very intense to try and prevent scar tissue from forming in the joint, and so much more…

Once I do have a surgery date, my GI dr. is going to contact my general surgeon so that my j-tube can also be changed to a new one while I’m under anesthesia. My current tube has been causing a lot of problems and pain.

My sleep specialist recently emailed me. He explained how I NEED to be using my adaptive-servo ventilator during ALL hours of sleep because my complex sleep apnea (central and obstructive) is so bad. He told me that I’m only initiating my own breaths about 40% of the time… That means the ASV device is breathing for me more than I’m breathing on my own. Trying now to work up to using it much longer than I’m used to….it’s just rough because of so many issues keeping me awake/waking me up.

I saw my pain doctor, and I was switched to a different opioid pain medication because my body was becoming tolerant to the one I was taking. Found out some concerning, bad news regarding opioids. The government (federal and state) is “cracking down”on opioids and making laws that are even more strict. My pain dr. said that down the road, there will be no more morphine, oxycodone, hydrocodone, etc. She explained how “this” is not good. The government thinks they’re taking positive steps to prevent overdoses, etc., but actually, my pain dr. said there has been an increase in heroin deaths that correlates with this decrease in opioids. All this happening with opioids is very concerning for those with chronic pain. I don’t know what’s going to happen in the future regarding access to pain medications. It’s scary. I have tried a ton of supplements and non-opioid pain meds (I even still take two different non-opioids), but none of those help much. Before I started taking opioid pain medication, I used to have to go to the ER numerous times for severe pain I was having. At the end of August, I do see my other pain dr. who works at UWMC in Seattle, and I hope to talk about all this…

I also recently saw my GI specialist. Found out some more discouraging news on top of all the above. In order to get off of IV nutrition (TPN), I would need to do 4 cans of tube feeding formula every day. 4 cans is the equivalent of what I receive in TPN. I can only tolerate 1 can a day. So it just seems like a lost cause. :’( But, my GI dr. said that I should just take the first step. And that would be, doing 1 can a day for the next 30 days (until my next GI appointment).

My blood counts have also dropped recently, so I’m now anemic. I’ve been even more exhausted than usual—-I woke up at 4:30 pm this past Saturday…I hate that I have to sleep so much and that there’s hardly any day left by the time I wake up. So in addition to my weekly labs that I get drawn, my GI dr. also added a ton of other labs to be drawn.

He got some of the results back, and a lot are abnormal. I’m very low in iron and ferritin. I’m low on vitamin D even though I take a D supplement. My vitamin B12 level was extremely high even though I don’t take a B12 supplement (mine was >2000 and normal is under 900). My dr. is out of the office for a couple of days, so still waiting to hear what to do about all this. He does want me to try a different IV iron that only requires 2 weeks of infusions vs. the usual 5 weeks, so that will be nice.

Soo, a lot to process… A lot of discouraging news… But I will keep persevering. Lately, I’ve been reflecting on this verse in the book of Job: “Though He slay me, yet will I hope in Him” (Job 13:15). I have so many things going “against” me, and it just gets harder and harder, but….my hope is and will always remain in Christ alone. This recent quote by Glenna Marshall was so thought-provoking: “Hope that is anchored in Christ doesn’t disappoint because it cannot be plucked from our hands the way that health, possessions, normalcy, and relationships can. Hope in Christ is eternally secure.”

I lettered the above quote by Joni Eareckson Tada on the iPad a while back, and those words are also so true…. God’s ways are higher than mine!

P.S. I head to San Diego in exactly two weeks! Can’t wait. Hope to get an update from my mito doctor about the phase 3 mitochondrial drug trial going on.

P.P.S. At the end of July, I am going to my first ever watercolor lettering + florals workshop in Portland, OR! I’m so so excited!! There will be two very famous hand lettering artists there—-one from Portland and one from California!

< Older Post Newer Post >

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