Reflections on this past year 2013
Kerissa • January 1, 2014
Another year is just about over! As I look back on these past 12 months….2013 was filled with unexpected events and a lot of “firsts” (and “seconds”). You could say this is my belated Christmas letter..
I’m sorry if this is a bit long….a lot happened this year. lol
In the middle of January
, I came down with a 103.3 fever that wouldn’t break, even after taking Advil and Aleve that morning and the night before.
I took my first
ambulance ride to the ER after the paramedics came to my house. I remember hearing one paramedic saying, “She’s burning up.” And still another told me, “I’m so glad your dad called us.”
My heart rate got very high (in the 150 bpm range)—the doctors had to quickly give me about 4 liters of IV fluids before things started calming down. One resident dr. told me, “You’re a troublemaker!”
My labwork came back all out of whack, and I tested positive for Influenza B. The flu hit my mom and sister as well, but it was the hardest on me because of the mitochondrial disease..
The flu caused a terrible CRPS flare-up
—the pain got so unbearable, and my feet swelled up.
Once I recovered from that ordeal, I had my first
bilateral lumbar sympathetic block to calm the pain down. After doing LSBs for 25 years, Dr. S told me that was his first
time performing a bilateral one!
In April
, my parents, sister, and I traveled to Cincinnati, Ohio for the first
time where I saw Genetics, Neurology, and Pain at Cincinnati Children’s Hospital Medical Center!
We spent a week there, and this is when the doctors really started suspecting mitochondrial disease.
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Met this precious little guy at the RMH! He was getting ready to have a bone marrow transplant! I know I shared this pic before, but it’s one of my favorites! |
On May
21st, my 90 year old grandma (my dad’s mom) passed away suddenly due to a suspected pulmonary embolism. :'( That was so hard, and it was the first
time my siblings and I really experienced the death of a grandparent (my oldest brother was only 6 months when our grandpa passed away from a heart attack).
A lot happened in July. My 89 year old grandpa (my mom’s dad) passed away from kidney failure. :'( We weren’t expecting that, also, because he was given up to 6 months to live. As you can imagine, that was so difficult for all of us to go through two close family deaths in not even two months. We all miss our grandparents terribly.
I’m not sure if it was because of the stress, but that month, I began experiencing chronic GI issues for the first
time (which are still going on today).
In July as well, my geneticist in Cincy ordered nuclear mitochondrial exome sequencing. That was my first
extensive genetic test which took about 6 weeks to be completed.
But before the test could get started, our insurance denied the exome sequencing because it was out-of-network. The lab had to go through the appeals process which took an incredibly long 5 weeks! But thanks be to God and the amazing laboratory Courtagen Diagnostics, the testing did get appealed! And our insurance agreed to cover the whole cost!
In August
, a caring and thoughtful family in our church let my family use their beautiful beach house for a whole week!!! That trip to the coast was much needed and such a blessing.
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| Our view from the beach house. |
Soon after my 21st birthday in October
, I had a second
lumbar puncture (spinal tap) to check certain lab values at the request of Dr. H, a mitochondrial specialist in San Diego. I’m still currently trying to get in to see him, but this again may take several months..
Beginning in November
, I started having difficulty swallowing (but not from a sore throat) and severe esophagus pain. Eating brought extreme pain, and for more than a week, it felt like food was stuck in my esophagus. For the second
time this year, I had to take another trip to the ER. The doctors had me stay overnight in the observation unit as they tried getting to the bottom of this. I had a test done called an esophagram, but this revealed nothing. They wanted me to get an upper scope of my GI tract, but they referred all of this to my GI specialist here in Oregon and the motility dr. in Cincinnati.
December
1st-14th, my parents and I traveled a second
time to Cincinnati Children’s Hospital Medical Center. I was admitted to the GI unit of the hospital for tests that could only be done inpatient.
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| All of this was for the GI manometry testing! |
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| And this is what it looked like on the computer screen. |
I also had a lot of outpatient tests/appointments with cardiology, orthopaedics, pulmonology, genetics, and neurology. Based on my genetic results, the doctors also think that I have a rare genetic neuromuscular disorder called Congenital Myasthenic Syndrome. This is on top of the mitochondrial disease.. They already started me on a cholinesterase inhibitor drug to slow the progression.
This has been a tough year for all of us, but your prayers/support and the Lord’s grace has sustained us through it all!
I don’t know what 2014 will bring….maybe it will be an easier year….or maybe there will be new trials and tests. But this I know 100%: my Lord and Savior is always always good, sovereign, steadfast, and faithful!
“Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ’s sufferings, that you may also rejoice and be glad when his glory is revealed.”
I Peter 4:12-13
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
