Mitochondrial Disease Awareness Week ~ September 18-24, 2016

Kerissa • September 22, 2016

Hey guys,

This week is Mitochondrial Disease Awareness 2016!

I just thought I’d go right in and share a little bit about mito in this post and how it affects so much of the body.

I have a mitochondrial depletion disorder which basically means I have less mitochondria than the normal person.  My depletion is very significant. You might ask, What are mitochondria?  In simple terms, mitochondria are the energy powerhouses in every cell (except red blood cells) that make ATP.  Every organ in the body needs energy to function.  Without enough energy (ATP), numerous medical problems result.  Because of my mitochondrial disease, all of this happens:

-Severe fatigue (I sleep 16-18 hours every day)

-Chronic neuropathic pain

-Use of a BiPAP machine due to sleep apnea

-Myoclonus (muscle jerks day and night)

-Nystagmus/oscillopsia (my eyes oscillate which feels like an earthquake in my head)

-Hyper reflexes due to a problem in my spinal cord

-Generalized slowing on EEG

-Headaches

-Myogenic bilateral ptosis (drooping eyelids)

-Left eye ophthalmoplegia (“paralyzed” eye muscles)

-Hypotonia (low muscle tone)

-Muscle weakness

-Exercise intolerance

-Hypoglycemia (low blood sugars)

-Dysautonomia

-Low blood pressure which causes high heart rate and lightheadedness

-Esophageal dysmotility

-Gastroparesis/intestinal dysmotility

-Nausea/vomiting

-Abdominal pain and distention

-Chronic constipation

-Failure to thrive

-IV nutrition every night through a central line in my chest

-A jejunostomy feeding tube in my abdomen

-Daily IV magnesium with potassium for hypomagnesemia (chronically low blood Mg levels from renal magnesium wasting)

-Hives/itching due to mast cell hyperactivity

-Tinnitus (ringing in ears) with partial hearing loss that comes and goes

-Anemia

-Neurogenic bladder

-Tremor (especially noticeable with daily activities that require fine motor skills)

Because of mito, I have more than 20 different specialists who care for me:

Neurology
Gastroenterology
Internal Medicine
Pain Medicine
ENT
Neuro-urology
Orthopedic Surgery
Physical Medicine/Sports Medicine
General Surgery
Hematology
Neuro-ophthalmology
Allergy/Immunology
Physical therapy
Mitochondrial Medicine
Sleep Medicine
Pulmonary Medicine
Cardiology
Hepatology
Nephrology
Podiatry
Palliative Care
Naturopathic Medicine

It can get overwhelming to have so many symptoms and so many doctors.

But as you read all this, please don’t feel sorry for me..  Rather, I’d like you to be aware of this disease and how it dramatically affects a life.

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Just “some” of the mitochondrial diseases that are out there…!

This journey has been extremely difficult, challenging, eye-opening, discouraging…..  And at times, I wonder how much more my body can take.  I can’t go to college and pursue a career like other young people my age.  At this point, I can’t “work” because I have 2-6 doctor appointments every. single. week. I often wish I could do “normal” things like other “normal” people.

But I also am filled with joy that I can share in Christ’s sufferings (1 Peter 4:12-13).  And I remember that the Lord has chosen this path for me.  I may not know the reason why in this life on earth, but I know that He is good, and I trust Him (Romans 8:28).

I can’t remember if I posted this before, but one of my close friends shared this beautiful quote with me—it sums up everything perfectly:

“Perhaps there is also something in your life causing you to question God. Do you find yourself saying, ‘I do not understand why God allowed my loved one to be taken. I do not understand why affliction has been permitted to strike me. I do not understand why the Lord has led me down these twisting paths. I do not understand why my own plans, which seemed so good, have been so disappointing. I do not understand why the blessings I so desperately need are so long in coming.’

Dear friend, you do not have to understand all God’s ways of dealing with you. He does not expect you to understand them. You do not expect your children to understand everything you do—you simply want them to trust you. And someday you too will see the glory of God in the things you do not understand .” ~J. H. M.

This awareness week is halfway over, but every blog post I write, I want to continue bringing awareness to this progressive and terrible disease.  So many babies, children, and adults suffer with mito, and I know there are many medical professionals and people who haven’t even heard of mito!  Before this journey started, I never even knew there was a disease like this where you can look so normal on the outside but have so much wrong on the inside..

P.S.  I mentioned in my last post how I started experiencing an atypical headache.  Well, it’s still not gone and is going on 3 1/2 weeks now. On top of that, my eyes have been oscillating (nystagmus) for more than 2 weeks, and it has never lasted that long!  I get ever so nauseated each day from all of this and feel so unwell. Something’s just not right, so I’m in close touch with neuro-ophthalmology, primary care, neurology, and pain medicine.  I have to get a brain MRI on Friday which will be my 20th MRI scan…  My doctors are trying to figure out if this is related to my mitochondrial disease or something new.

P.P.S. I found out that my muscle biopsy tests through Baylor haven’t even been started yet. They’re still waiting on insurance authorization.  Waiting is so hard!

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