Thrown a Curve Ball #2
Kerissa • August 10, 2013
What a week! To my great surprise and disappointment, I found out on Tuesday that the exome sequencing DNA test hasn’t even been started yet…
Here I thought the test was almost completed! Long story short, we found out that this certain laboratory in Massachusetts is out-of-network for our insurance. So ever since July 1st, the lab (together with my doctors) has been doing all they can to get this DNA test covered, appealing and fighting to show insurance how necessary this test is. I don’t know what’s going to happen, but I should hear by next week what they find out. I know it’s in the Lord’s hands. Thankfully, if getting the test through this lab doesn’t work out, there are always others.
On Wednesday, I heard back from that mitochondrial specialist in San Diego.
After thoroughly reviewing the referral and my records for 5 weeks, the dr. formed a plan. Before he decides whether to see me, he’d like me to get some extensive tests done first and then review the results:
1. another lumbar puncture (spinal tap) — I can’t even remember what it is he wants to check in the cerebrospinal fluid because it was too complicated..
2. whole exome sequencing — if the lab in Massachusetts doesn’t work out, he recommended one in Maryland.
3. repeat electromyogram and nerve conduction study
4. possible muscle biopsy
He sat by a fire of sevenfold heat,
As He looked at the precious ore,
And closer He bent with a searching gaze
As He heated it more and more.
He knew He had ore that could stand the test,
And He wanted the finest gold
To mold as a crown for the King to wear,
Set with gems with a price untold.
So He laid our gold in the burning fire,
Though we would have asked for delay,
And He watched the dross that we had not seen,
And it melted and passed away.
And the gold grew brighter and yet more bright,
But our eyes were so dim with tears,
We saw but the fire⎯not the Master’s hand,
And questioned with anxious fears.
Yet our gold shone out with a richer glow,
As it mirrored a Form above,
That bent o’er the fire, though unseen by us,
With a look of unspeakable love.
Should we think that it pleases His loving heart
To cause us a moment’s pain?
Not so! for He saw through the present cross
The joy of eternal gain.
So He waited there with a watchful eye,
With a love that is strong and sure,
And His gold did not suffer a bit more heat,
Than was needed to make it pure.
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
