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.

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!

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Another surgery 😞

By Kerissa Lee • July 25, 2026

Hi, friends, I thought I wouldn’t be posting for a while since I’ve been doing really well, but I’ve hit a bump in the road again and would appreciate your prayers. 💚 This past Tuesday the 21st, after nearly 12 years living with it, I had my jejunostomy tube removed completely. I thought it was going to be a simple process and that the stoma (hole) would close quickly within 30 minutes like they said. That didn’t happen, though, as the stoma started draining a ton! I couldn’t even leave the lobby and had to go back up to the clinic on the 8th floor to have an ostomy bag placed to collect all the small intestinal digestive juices that continually drained. Unfortunately, I’m experiencing a very rare complication called an enterocutaneous fistula. 🥺 I’m disappointed this is happening, but I’m not exactly surprised since my whole medical case with Mitochondrial DNA Depletion Syndrome has been rare from the very beginning.. I also don’t heal well due to connective tissue problems from Ehlers-Danlos Syndrome (case in point: my port site issues back in May when I had to have a new one surgically placed on the other side of my chest).. 😞 The clinic told me to keep emptying the ostomy bag and monitor the output. It wasn’t a fun 2 days. This whole process has definitely made me so grateful to God that I’ve never needed something like an ileostomy! TMI, but I lost almost a whole pound of fluid because so much was gushing/spurting out of the stoma every time I ate or drank. Losing so many electrolytes, I started experiencing symptoms of dehydration—weakness, high heart rate, and headaches. So yesterday, I had to go back and see the surgery resident who basically placed another j-tube (it was so painful again!). 😭 This is a temporary “plug,” and I’m bummed to say that I have to go to the operating room to have the jejunostomy tract taken down and the fistula repaired. This surgery will be happening as early as next week (it depends on my surgeon’s schedule).. She said it will be complex, especially because adhesions (scar tissue) form when a person has multiple abdominal surgeries.. I lost count what number this surgery/procedure will be, but I do know I’ve had more than 20! 😞 I know God is with me wherever I go and will supply me with the strength to endure yet another surgery like he always does. But, I’m still sad that I have to have more incisions added to my body. I shared the lyrics to this song before on an old blog post (the song is called It Is Well With My Soul by Matt Redman), but it immediately came to mind again when I was thinking of scars. As the song below said, it’s a reminder to me that my scars can be a testimony to others of God’s grace in my life and how he has brought me through every single pain and sorrow. In the Bible, I’ve always thought it’s so neat that Jesus still had his scars after he rose from the dead—he had a new body, and yet, his scars were still visible. ❤️ Our scars are a sign of grace in our lives Oh Father, how You brought us through When deep were the wounds And dark was the night The promise of Your love, You proved Now every battle still to come Let this be our song It is well (it is well) With my soul (with my soul) It is well, it is well with my soul

The end of an era ❤️

By Kerissa Lee • July 16, 2026

Dear friends, I shared in my last post how excited I was that my j-tube was going to be switched back to the low-profile version at an appointment on June 23rd. Well, that sadly didn’t happen because my surgeon wasn’t comfortable with how much pain, swelling, and bleeding I was still experiencing. It’s a long story and hard to understand unless you’re very familiar with j-tubes, but basically, she said switching wouldn’t be a good idea, and we could try again in a few months. Unfortunately, things have only gotten worse, and no matter how many times I adjust this j-tube, the balloon for some reason keeps getting lodged into my abdominal muscle—it causes horrible pain, and not even my pain medication helps! I almost went to the ED the other day…that’s how bad the pain has been. 🥺 After thinking and praying about it a lot, I finally decided to ask my surgeon if I could have my j-tube completely removed since she still can’t find the cause of why the balloon keeps getting stuck. It’s been nearly 12 years using one, so this is a big deal! I just feel like the tract is somehow failing since the surgery was so long ago. Unfortunately, it can’t be done until the last week of July since it’s a policy of the surgery clinic to not use the tube for 2 whole weeks before completely removing (don’t know the exact day of removal yet). I can’t believe it’s almost the end of an era! The Lord has been so faithful and given me strength to endure over a decade of having a constant tube sticking out of my abdomen. Some days were truly so rough—remember I had that huge abdominal abscess back in 2023 and had to have bedside abdominal surgery and drains placed in the ED? I couldn’t have done this without God’s help. 🥹 You might be wondering, “What happens if I get worse again or have more mitochondrial flares?” Thankfully, I still have my port, so if I was hospitalized many times again, I would be given IV medications and infusions. And, if I did possibly need a tube again, I could have a g-tube placed in my stomach which is a much smaller surgery than a j-tube placed in the small intestine. We’ll cross that bridge if we come to it! In other news, I’ve been continuing to do so very well mitochondrial-wise, and God has been gracious and merciful! I feel undeserving of this huge gift of health when so many others I know are struggling (please keep praying for my uncle who’s been in the ICU since March)!! 😢😔 Aside from all these tube issues, life lately has been so full, but in the best way. I was able to study and complete the training to receive my Pediatric First Aid/CPR/AED certification! I’ve been applying to different nanny jobs and even had my first interview last week! It would simply be amazing if it would work out to have a part-time nanny job for 1-2 days per week when I don’t babysit my foster nephew. Speaking of my sweet foster nephew, he recently turned 1!! He had a “One-in-the-Sun” 1st birthday party which was super cute and special! It’s been so neat to see God’s hand on his life from birth til now.. Considering he was in the hospital for a whole month after he was born, he’s truly come soo far, and life is very sweet with him in it! 🥹💙 On top of all that, I was finally able to take the DMV driver’s test, and guess what?! I PASSED!!! 🥰 So so happy and thankful I was able to complete this simple rite-of-passage that many people half my age often take for granted. I constantly think how huge of a gift it is to simply be physically well enough to drive around town. 🥹 After reading this, you might think I'm all healed! And while I am feeling so much better than before, I just wanted to share that I still do experience mitochondrial symptoms every day: spasticity (it often wakes me up during the night because my back muscles tighten/spasm a lot), central vertigo, minipolymyoclonus which causes muscle jerking and tremors in my hands, chronic pain, insomnia, and many other things. But, I'm so thankful to God for different medications I'm on to help these ongoing issues. There are good days and bad days, but I just look back and see how much worse I used to be! I don't know how long this stable period will last, but I continually thank and praise God for it! 🥹

June update (with happy news!)

By Kerissa Lee • June 17, 2026

Hello, friends, I just wanted to share a blog update and thank you all so much for your prayers these last several weeks. ❤️ They help me to persevere! I previously posted that the interventional radiology team said my old port needs to be removed because of the site being too exposed from skin breakdown. Well, on May 19th, I had a virtual appointment with the IR nurse practitioner. To my great disappointment, she didn’t want me to get a new port and said I need a central line instead. I tried explaining to her that all my previous central lines always got infected and caused sepsis, but she still wouldn’t budge. 😞 I left that appointment and cried. I kept reciting Romans 8:28 (“And we know that for those who love God all things work together for good, for those who are called according to his purpose”). I knew that God was in control, but I was still so sad.. The next day was my port removal surgery and central line placement. Many of you already know this from FB/IG, but I wanted to re-share the following here on my blog as well! When I met the attending physician who was going to do the surgery, I told him my whole story and asked if he could please consider placing a new port instead of a central line. And do you want to hear something soo amazing?! He nonchalantly said, “I can place a port!” I was so shocked! 🥹 I immediately felt God’s mercy and kindness in sovereignly arranging this specific doctor to be the one to care for me. Both surgeries were back to back, and everything was much more difficult than he was expecting! In his chart notes, he stated that it took “more than twice the usual time, an unusually large amount of materials, and required a very high level of technical expertise and skill.” It was a great challenge removing my old port because of scar tissue and because it was so embedded to my chest wall. 😥 He had to yank, pull, and manipulate a ton—all of that caused a huge bruise to form over my chest. When he used fluoroscopy (moving x-ray), he also saw on x-ray that there’s a 7 mm cylindrical foreign body in my chest (pictured below). He assumes it’s a retained port fragment from an old port surgery that happened years ago. We’re just going to leave it there.. 😟 I was awake the whole time because none of the sedation meds worked! I’ve unfortunately had more than 20+ surgeries/procedures, so my body has become immune to certain sedation meds. The team recommends that I have much stronger anesthesia next time.. So thankful that the Lord helped me through this painful process! In other news, I finally get to have this temporary, bulky j-tube replaced with a low-profile one on the 23rd! My GI surgeon was hoping that the temporary tube would give the site a break and help heal all the inflammation (which was caused by buried bumper syndrome when the balloon got stuck in the abdominal wall 2 months ago). And I think that did the trick because the site is no longer leaking a ton! 🥲 Praying that switching back to the low-profile tube doesn’t cause an uptick in pain/leaking.. Last week, I had a bit of a scare when blood started coming out of the j-tube stoma (hole) for several days. We don’t exactly know what caused the bleeding, but thankfully, it stopped! If it does happen again, the GI nurse practitioner ordered an abdominal ultrasound.. If you made it this far, I’d so appreciate continued prayers for my sleep. Still experiencing bad insomnia as a side effect from an important medication that I need. It’s so hard when I can’t fall asleep until after 5:30-6:30 AM every single day. 😔 I don’t know what else to do except take each day as it comes and lean on the Lord for endurance. 💚 Aside from this, still so grateful to God that I’m doing really well mitochondrial-wise! For those who may not remember, my naturopathic doctor at the OHSU pain center started me on 2 very strong antioxidants last year: liposomal glutathione and n-acetyl cysteine. When I started taking both regularly for several months, the neck weakness resolved and the overall muscle fatigue improved a lot. By God’s grace, I’ve physically been very stable which is a huge answer to prayer!! 🥹 P.S. It’s taken me a while to share this, but a few months ago, I added 11 new card designs to my shop. Here are some of my faves. ☺️ I’ve sadly run into another unfortunate predicament with the e-commerce site I sell on, but I’ll try to share that story another time.. 😕