Pain and Potassium Problems.

Kerissa • February 23, 2017

“I choose to believe that God is good even though He doesn’t heal me.  That when life goes wrong and I suffer, He is with me.  To join with the prophet to sing “He deals wondrously with us!” even when the wonderful life I expected doesn’t turn out the way I’d hoped.” |

He Speaks in the Silence

Hello everyone,

First off, for those who aren’t on Facebook, I just want to share with you some good news!!  Last week, I had a repeat venous duplex scan to check up on the DVT (blood clot) that formed in my subclavian and axillary veins.  Well, guess what?!  The clot is completely gone!!  Isn’t that amazing?? All the glory goes to God!  Thank you all for praying for me during these last few weeks.  I’m blessed to have an army of prayer warriors by my side!

Last Thursday, I had a post-op surgery appointment.  Unfortunately, my jejunostomy feeding tube that was replaced while I was in the O.R. for my port surgery a few weeks ago was not the correct size. That is, they got the diameter correct but not length. *sigh*  So at this post-op appointment, the surgery resident replaced the feeding tube, and I had to be completely awake for it without any numbing medication. :'(  The procedure was extremely painful because my skin around the stoma (hole) was all raw and inflamed from the tube being the wrong size.  It was an 11 on a pain scale of 1-10.  Seriously! The tube is about a foot long, and I couldn’t breath because I could feel the doctor push the tube in inch by inch.  I’ve experienced a lot of painful procedures, but I think this tops it all.  I don’t know how I’ll bear another tube change in 9 or so months….I dread the thought of it!!  But I will try not to worry about the future..  I am reminded that God’s grace is sufficient.  It is enough.  For today….for the future.

Since November, I’ve had a lingering cough that I just can’t seem to kick.  If I have a lot of doctor appointments and I need to wake up “early,” my cough worsens when I’m tired and I have to use my inhaler more often.  Well in December, the cough was especially bad, and I started experiencing terrible upper right back pain then.  It hurt to breathe even!  And my physical therapists weren’t sure what was going on.  The pain was way worse than a muscle strain.  But the CT scan I had for that blood clot showed what was wrong.  It turns out that I fractured a rib….just from coughing! Wasn’t expecting that!  I’m glad for answers, though.  Based on the images, my rib is still healing..  My physical therapist said my bone mineral density is weak because of all my conditions..

We’re not sure what’s going on now, but I haven’t been feeling well. I get a very achy back that comes and goes, and it worsens to the point that I need one of my strong pain medications.  My blood potassium level has also been lower than my normal, so I told my nephrologist.  I believe she’s going to add more potassium to my daily IV magnesium infusion bags to see if that helps.  On top of that, I’ve had a severe, pounding headache the last few days with nausea, and we don’t know if this is all related with the back pain and potassium issues..

Or is the headache from my anemia, the nausea from all the pain, and the achy back from the low potassium?  Or, is my body just now having a rough time recovering from all that’s happened the last several weeks (DVT, port surgery, San Diego trip, feeding tube replacement, broken rib, cough, etc.) and I’m going through a “mito crash”?  I almost had to go to the ER yesterday…I felt so horrible, and I still do this evening. But I am seeing my PCP (my main PCP is on maternity leave) in evening clinic tomorrow, and I pray he can help..  Trying my hardest to avoid the ER!

Continuing to take it one day at a time.  I recently read something really encouraging in Joni Eareckson Tada’s newest devotional A Spectacle of Glory—“I may walk in pain, but I also walk in grace.”  So very true, and I remind myself of this often. She also writes, “For all the many times [the apostle Paul] was distressed by his weakness, he had the supporting grace of Christ…..grace always, always meets us at our point of pain!”

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