Partial muscle biopsy results (and other stuff..)

Kerissa • October 11, 2016

Hey friends,

A lot has happened since I last posted..

For those who were on FB at the end of September, you can just pass over this whole paragraph as I’m basically saying the same thing. lol On September 22nd, I had an adverse medication reaction that exacerbated my mitochondrial disease….I was taken to the ER by ambulance because I experienced nausea/vomiting (that wasn’t resolving with my home anti-nausea meds), high heart rate/respirations, and weakness. In the ER, I had to be given oxygen because my saturations kept dropping to 82. My white blood cell count was high, and other labs were off. This concerned the doctors, so they did a full infection work-up with urinalysis, blood cultures, and additional labs. After not being able to empty my bladder for over 10 hours, I had to be cathed, too. *In August after my hip surgery, I had to be cathed then as well. I’ll never get used to the procedure as it’s so painful! I know it’s TMI, but I just want to share the unpleasant details sometimes to show how rough mito is.* I was admitted for 4 nights after this med reaction because I was so weak. The doctors came to the conclusion that I had stress-induced leukocytosis—the body gets so traumatized that it starts preparing for something bad like an infection, hence the high WBC count. Thankfully, there was no infection, and my labs soon normalized after numerous liters of IV fluids. This whole hospital ordeal at the end of September took a lot out of me.

I saw my GI dr. the day after I got discharged. I had a pulmonary resting energy expenditure test done on Sept. 19th to calculate how much CO2 my body burns, how much protein I need, etc. But he never received the results! He’ll either call me or just wait until my next appointment which is at the end of this month. Based on the results, he’ll adjust my IV nutrition. When I was in the hospital, the hospitalist recommended I receive 1 liter of IV fluids (vs. my usual 1/2 a liter) a day for one week. So my GI dr. ordered that. I only have 2 more days of this regimen! It’s hard lugging around a very heavy liter of fluids in addition to the IV pump for a total of 6 hours a day. :/

Last week, my eyes stopped oscillating completely….but that only lasted for about 4 days. It’s now back. I’m grateful for that break, even though it was short!

I had my brain MRI, and it was a clean scan. I know that’s good news, but I’m still having a throbbing, right-sided headache. I told my neurologist, and she said there’s often no clear explanation for why chronic headaches get exacerbated. It could be so many reasons. I have a follow-up appointment with her at the end of the month to figure out what to do.

I turned 24 this past Friday, and while it was a special birthday (my family is the best!!), I didn’t feel super great—my hip was aching terribly, I had a bad headache, and I didn’t sleep well Thursday and Friday night. Saturday evening, I threw up a ton—my stomach didn’t have the energy it needed to move the soft food and liquids I had that day out of the stomach and into my small intestine….it was the worst yet.

Last week, I also saw my orthopedic hip surgeon. Unfortunately, my surgery recovery/physical therapy progress keeps getting set back with each ER visit and hospital stay, so my hip isn’t doing well. The pain is bad, and she said that’s not normal this far out of surgery.. She thinks there’s scar tissue in the joint. My physical therapist is also worried about the hip stiffness. So my surgeon wants me to get a hip steroid injection to calm things down and help the inflammation. Physical therapy has been very aggressive to work at this, and it continues to be twice a week at OHSU.

Today I saw my palliative care dr. We discussed all that happened in September and talked about different ways to manage the headaches/pain better. It’s definitely a trial and error process!

Oh yes, before I keep forgetting to tell, I received my initial muscle biopsy pathology results from OHSU (these aren’t the Baylor tests….still waiting to hear if they got authorized by my insurance…my neurologist had it all taken care of with the medical director of my insurance, but the director forgot to document everything, so my dr. has to start the process all over again!).

OHSU performed basic histology and ultrastructural studies, and sadly, the results are a lot worse than my muscle biopsy histology results done at UCSD back in 2014.. It’s kind of hard to explain, but in 2014, my basic histology was normal…it was only when they ran more tests that they found the mtDNA depletion (a significant one!). But the histology test done at OHSU in August of this year showed “diffusely pale” tissue which indicates that I hardly have any mitochondria in my muscle. :/ The pathologists noted “paucity of mitochondria.” Paucity means scarcity. A lipid depletion was also found, but I don’t know what that means specifically in my case.. Since my histology shows tissue evidence of a mtDNA depletion, that probably means my depletion results (once it’s completed at Baylor!) will be even worse than the 2014 depletion study.. We don’t know if all this means disease progression or what.. I will be seeing my mitochondrial disease specialist in San Diego again this coming January or February to go over everything.

Phew, hope that last paragraph was easy to understand! Sorry for the super long update!! I no longer journal like I used to (my hand cramps up from the muscle weakness), so I like typing all the details here to remember everything.

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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.. 😕

Surgery on Wednesday

By Kerissa Lee • May 15, 2026

Hi, friends, Last week, I unfortunately caught norovirus from my parents who caught it most likely from a wedding. 😞 All the vomiting caused dehydration, and my heart rate was high (up to 150 bpm). Every 30 minutes, I kept getting a notification on my Apple Watch saying that my heart rate was too high. Thankful I didn’t have to get admitted and could infuse the rest of my IV bags here at home. My neck is showing signs of weakness like after the time I got sick in Hawaii. 🥺 Really praying the muscles are just trying to recover from the vomiting/dry-heaving.. On top of that, the skin at my port site has sadly been breaking down over time. My dr. ordered a PICC line for me to let the port site heal. But the IR (interventional radiology) team said I need to have my port surgically removed because the site is “too exposed.” Definitely wasn’t expecting that! 😥 The IR team wants me to get a central line instead of another port, but I tried explaining to them that I’ve had sepsis too many times from multiple central lines. Plus, my quality of life is so much better with a port because I can shower when the needle is de-accessed. That’s just one of the reasons.. If I had a central line, I’d have to cover it and put tape all over which is not fun. I have a virtual appointment with someone on the IR team this coming Tuesday. Could you please pray the radiologist will be understanding, compassionate, and willing for me to have another port placed? I know this is in God’s hands regardless of the outcome. 💚 Surgery to remove my port and place something new (whether it’s a port or central line) is this coming Wednesday.. We’ll know the time the day before.. I’ve been reading a memoir by a young mother named Amber Emily Smith who tragically lost her 3-year old son to drowning in their family’s pool. In her book, she shared the story of the poet Annie Johnson Flint who developed a severe arthritis that left her hands disfigured and also caused her unable to walk. It was in the midst of her suffering that she became a poet. I’m sure many of you have read this poem before, but it’s such an encouraging one, and I hope it fills your heart with hope. ❤️ “God hath not promised smooth roads and wise, Swift, easy travel, needing no guide; Never a mountain rocky and steep, Never a river turbid and deep. But God hath promised strength for the day, Rest for the labor, light for the way, Grace for the trials, help from above, Unfailing sympathy, undying love.”