June 2021 update and prayer requests
Kerissa • June 17, 2021
- I lettered this piece a couple years ago and never shared it until now. I’m so grateful to God that He “does not leave us as we are.” My earthly body is so broken from disease (more on that below), and to know that Christ will one day give me a new body—what a wonderful promise.
- For the past 3ish weeks, I’ve been experiencing lightheadedness along with a severe, persistent headache every single day and night. It’s been so very hard to go through as none of my pain meds have been helping much. On top of mitochondrial disease, I have something called Wilson’s Disease which is where an overload of copper builds up in my organs (the brain and liver especially) unless I take a specific medication to block the copper. Well, there has been a shortage of that med in the US, so I haven’t been able to take it. We’re not 100% sure this is the cause of my headaches and other neuro symptoms, but it seems most likely as not taking the med could be causing copper to build up in my brain. My main pharmacy told us the medication I need is still on back order. But this past week, my parents called numerous pharmacies, and God led us to one that carries it! So so thankful! I would appreciate your prayers that this will alleviate my terrible headaches and other symptoms, and if not, that we will be able to pinpoint the cause…It’s just been so horrible.
- Both of my wrists have been healing pretty well from the surgeries I had in April and May (still doing weekly hand therapy), but something new is going on—there is a painful bump that is growing under my left wrist. One of my orthopedic specialists at OHSU took a look at it and referred me for a wrist MRI as my ortho hand surgeon is booked out until July 20th.
- On top of all this, I most likely tore my right hip labrum again (for those who don’t know, I had left hip surgery in 2016 and right hip surgery in 2018 to repair torn hip labrums).
Not sure how it happened this time, but as I get older, I’ve been dealing with more joint issues from Ehlers-Danlos Syndrome (another disorder I’ve had since 2012). My hip surgeon team ordered a right hip MRI arthrogram to get the ball rolling on whether I’ll need surgery again.
- In addition, my tongue has been getting weak…I’m not swallowing correctly from the weakness, so my tongue is pushing out my bottom teeth. I grew up with a class 3 underbite (the most severe class!) and had to get it corrected, so this new problem is not good.. I saw my swallowing doctor, and I thought maybe seeing his swallowing therapists could strengthen my tongue. But he said that’s the last thing you want to do with mitochondrial disease. Since I’m deficient in energy, doing swallowing therapy would use up all my strength, and I’d be too exhausted to chew/swallow. He said there’s nothing we can do about my weak tongue—he was so compassionate in explaining. He agreed it’s a good plan to see the OHSU dental team to keep my teeth from being pushed out even further…but we’re not even sure if/when I can see them as the board is still reviewing my chart..
- All my diagnoses (Mitochondrial DNA Depletion Syndrome, Wilson’s Disease, Ehlers-Danlos Syndrome, etc.) do not have cures, so my doctors can only treat symptoms. Treating symptoms involves A LOT of medications and surgeries.
- These different issues happened all at once, and it’s been really rough. Each new health trial has been a test of faith. I’m still not able to hand letter, and I miss it soo much. It just feels like yet another thing I love is gone. I know it’s temporary, but still.. So I ask myself continually, “What does God want to teach me during this season?”
- This verse immediately came to my mind from Psalm 37:7–“Be still before the Lord and wait patiently for him.” Just 2 verses before this one, it says, “Commit your way to the Lord; trust in him, and he will act.” Being still and waiting patiently before God is trusting in action.
- As I navigate these new trials, I ask God to give me courage to trust in His plan and this path He has set for me.
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. 🥹
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
"God is always doing more than we know, working toward a good we will one day rejoice in." -Lysa Terkeurst
