What a day!

Kerissa • August 15, 2012

Since my voice is gone (I’ll explain why in a minute ;), I decided to blog now cuz I have nothing else to do…just kidding.  But really, I pretty much can’t eat or drink, and I’m so hungry since I haven’t eaten since yesterday..  Anyway , here’s the story of my day:

Once I arrived at the pain center, I got checked in and was able to see my favorite nurses.  They’re the sweetest!  I also met a new fellow.  He’s so kind and compassionate.  It’s hard to believe that this is the third set of fellows that I’ve seen so far!!  When my pain dr. came in, I asked him, “Are we ready?”  Procedures are nerve-wrecking.  He laughed and told me he’s ready emotionally!  Once I was on the procedure table in the “operating room,” my docs used ultrasound to locate all the structures and arteries for safety reasons and to try to find a good spot to block the pain.  But they had to resort to fluoroscopy only because ultrasound wasn’t giving them a good view of where to inject the medications..  Saying it was painful is an understatement.  And choosing to stay awake probably didn’t help..  They had to really dig their fingers deep into my neck to feel for the vertebrae.  It was hard to breathe cuz they were pushing so hard.  I ended up having to get “poked” twice because the first area didn’t work to inject the medications…this meant they had to dig even more!  Despite their painful probing, I’m so thankful for them.  They were able to keep a light and fun attitude in the midst of a challenging procedure.  They called me a “champ” and a “trouper,” and they kept telling me I’m doing great.  My nurse held my hand and stroked it, haha.  She’s the best.  The procedure was pretty long, so once they pulled the needle back out and sat me up, I was so relieved!  Soon after it was finished, I moved my hand and looked at it.  The swelling reduced, and the color was better!  Even the pain went from a 9 to a 1-3.  Everyone was so happy.  Within minutes, my left eye started drooping which is called Horner’s Syndrome.  Thankfully, that’s only temporary because it’s a “good” side effect of the block.  When I went down to the lobby, I suddenly lost my voice which is also another good side effect because it tells my doctors that they injected in the right place.  All through physical therapy, I had to whisper to my therapist, and he kinda had to do all the talking, haha  It was pretty humorous.  After PT, I ran into my hand therapist.  It was so nice to catch up a little bit.  He jokingly told me I’m going to waste away since I haven’t been able to eat.  I also can’t cough or yawn cuz my nerves are temporarily not able to control my vocal cords, trachea, etc.

So here I am, still not able to talk or eat well.  If I try to swallow, I sometimes choke.  My neck hurts really bad, too.  I’m trying to wait patiently for all this to pass!  I’m to keep a pain diary and record my pain level every hour for today, then once every day until I fill out the whole page.  I’ll be seeing my pain dr. in a few weeks for follow-up..  I’m not sure what’s ahead…these blocks are temporary, but I really pray the severe pain stays away for at least a month!

Thank you for your prayers!  God is good all the time!  I’m so blessed.

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. 🥹
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
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