Catching up

Kerissa • February 8, 2017

Hello friends,

This is super long, so feel free to take a break and come back to this if need be… I’m sorry it’s been so long since I’ve done a proper update. Too much has happened. :O Thank you so much for all your prayers, cards, and emails! You fill my life with joy time and again.

Mitochondrial Medicine —

On January 17, my parents and I saw my mitochondrial specialist in San Diego. I have now seen him in clinic 5 times. At this appointment, he looked over all of my muscle biopsy results (the electron transport chain enzyme analysis, the mitochondrial DNA content analysis, muscle CoQ10 determination, electron microscopy, and histology). In the mitochondrial electron transport chain, there are 5 complexes, and all 5 complexes work together to make ATP (energy). Well, the analysis that was done shows that all my complexes are deficient (low). They’re all deficient because of my significant mitochondrial DNA depletion. My muscle CoQ10 is also very low, so I have to switch to a more potent form of CoQ10 (called Ubiquinol….I actually was taking this before, but it’s very expensive..). Based on all of the information collected, my mito specialist says I have a definite (no longer probable) mitochondrial disease—specifically, a mitochondrial DNA depletion and a mitochondrial depletion. Haha, you’re probably wondering if I’m repeating myself.. But no, those are actually two different things (I won’t try to explain the difference.. lol). He’s never had a patient with both! So he wanted to take a picture of me, and he plans to bring up my complex case to his colleagues..

He wants me to have yet another genetic sequencing panel done (hopefully my last!), but this one will look closely at all the depletion genes and even check for deletions.

My mito dr. also wants me to be a part of this certain registry of 200 patients. I don’t know a whole lot of information yet (hopefully in the next couple weeks), but it’s related to the clinical trial that he’s currently a part of. I’ll definitely keep you posted.

All in all, it was a good appointment and a lot to take in again. My muscle biopsy results are much worse than my first biopsy back in 2014, and we don’t know if this is disease progression or what..

He wants to see me back in 6 months, but we’ll probably see him in a year or longer instead (especially since I heard back from that mitochondrial geneticist in Pasadena, CA—I will be seeing him this May!!).

Pain Medicine —

On January 18th, I had an appointment with the medical director of the UCSD pain center. It was very helpful. He gave us a lot of information on medical cannabis and how much it can help nerve pain, muscle spasms, and more. We have endocannabinoid receptors all throughout our bodies, and that’s why patients usually respond well to medical cannabis. I hope to eventually trial CBD oil (FYI, I’m not interested in the psycho-active types of cannabis..lol ;). This pain dr. works very closely with a Ph.D. in botanical medicine/horticultural studies. She actually is a naturopathic physician and can do phone appointments with patients who live out of state. So I have a phone appointment with her on February 23. She’ll help me with dosing and tell me what type of CBD oil is best for the small fiber neuropathy that I have.

General Surgery —

I had my port surgically placed on January 27th. Surgery went well, but last week was so rough. :'( My nurse wasn’t able to access my port. She tried 2 different sized needles, and for some reason, my port wouldn’t flush even though she poked me 4 or 5 times. It was so very painful and complete torture since the surgery site was so fresh. She even had another nurse come over and try accessing, but that nurse didn’t have success either. The nurse came again 2 days later to try once more with another needle size. But again, no success. My nurses have accessed hundreds of ports, and they said this has never happened before. I even pulled off with my hands all the surgical glue over my incision in case it was “plugging” the hole of the needle.

I had to go without IV nutrition and IV magnesium for 3 whole days. I was finally able to get an appointment at the OHSU infusion clinic this past Friday, and by God’s grace, the nurse was able to access my port on the first try! We’re not sure if it’s because they used a power port needle with a bigger gauge (my home health infusion company only carries a basic port needle). I wish the needle didn’t have to be so thick, tho!

So glad that the port is now working…. My GI dr. was worried I was going to have to head to the ER and get a PICC line placed in my arm if this infusion nurse couldn’t get it to work..

Hematology —

The deep vein thrombosis (blood clot) is actually located in my subclavian and axillary veins. There’s no blood flow through those veins. I had a chest CT scan right before surgery, and thankfully, it showed that the clot does not extend down into the superior vena cava. But I have to get another venous duplex ultrasound scan next week to make sure that the clot has not grown. If it has, my OHSU hematologist (who is nationally known!) will decide on what to do and if I need to be placed on anti-coagulant therapy….but my case makes things more complicated, so we’re praying that doesn’t happen.. Also, research has shown that blood thinners don’t really help catheter-associated DVTs.

Phew! I think I need to take a break typing this… ha ha

Neurology —

I saw my neurologist on January 30th, and she is going to work on getting insurance authorization for the depletion gene sequencing panel that my mito specialist wants completed. She is also upping one of my medications that I take for my headaches as they are not quite under control yet..

Gastroenterology —

This afternoon, I had my monthly follow-up with my GI specialist. I will be having my weekly blood work drawn tomorrow, and he wants to see how my electrolytes look, especially since I went without TPN/IV Mg for 3 days last week and lost fluid weight. He’s also going to keep an eye on my blood counts since I’m starting to become anemic again.

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Next week, I have appointments with physical therapy (twice), diagnostic imaging, pain medicine, and general surgery. And I’m dreading it because they’re on Monday, Tuesday, Wednesday, and Thursday….and all at the OHSU Center for Health and Healing. Lots of driving.. :/ OHSU is building a guest house right next to the center, and it will be completed next year! I hope I can stay there whenever I have several appointments in a row because I just feel sometimes like I live at OHSU..

P.S. One last thing, and then I’ll stop (could this be my longest post ever?!).

This week is Feeding Tube Awareness 2017!!

For those who don’t know, I have a feeding tube inserted in my jejunum (part of my small intestine). I receive a peptide-based (broken-down) formula. I also recently started putting through my j-tube an organic grass-fed whey protein nutritional shake (that I found online and is also sold at stores like New Seasons and Whole Foods). I tolerate it well…maybe even better than the peptide formula! And I love that it’s organic, grass-fed, and even contains fruits/veggies!

I also have a port implanted in my chest. Every single afternoon, I receive 4 grams of IV magnesium through my port from about 4-8 PM. And every single night, I infuse TPN (IV nutrition) through my port. After each infusion, I have to flush my port with saline and heparin. Before my feeding tube and all the central lines I’ve had, I was malnourished, chronically dehydrated, and labeled “failure to thrive.” It’s hard having a line and a tube coming out of me….and it’s hard being hooked up so often….but I’m very thankful I’m no longer dehydrated and malnourished!

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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.”