2019 Mitochondrial disease appointment recap

Kerissa • August 17, 2019

Hey friends,

First of all, I’m sorry it’s been so long again since I last blogged. Last month, I had my mitochondrial appointment in San Diego—traveling and the trip in general was hard physically (more details below), so when we got home, I had terrible nystagmus and other rough mito symptoms. And then, 2 weeks after that, I had an appointment with my pain doctor in Seattle. So it’s been pretty busy!

I also never mentioned here that I got a little job in January. I am a hand lettering artist with a company called Punkpost (you can look at their website here: Punkpost.com). If you look around on the site, you might find a picture of me! I create card art designs for the company, and I also hand letter customers’ messages in the cards! This has truly been a gift from the Lord to be able to work from home and earn a little money! Here’s some fun news: I designed a Father’s Day card a few months ago, and for the whole month of June, it was the second most sold card out of all the Punkpost cards!! If you have Instagram, you can see the cards I’ve designed so far and also all of my other lettering art! And sometimes, I post pieces on there that I don’t post on Facebook. My IG account is @kerissa_kreative. It’d make my day if you followed along with me on my lettering journey!

But back to the San Diego recap.. Even though we’ve been going to SD for the past 5 years, this latest trip was kind of a disaster. I won’t go into all of the details because it would take too long to type, but I will tell you one of the biggest things that happened…

We had a lay-over in San Jose to change planes, and an older lady who lives in San Jose took from the carry-on luggage (the area above the seats) the bag that carried my adaptive-servo ventilator because it looked so very similar to her c-pap bag.

So, when I was getting ready for bed at the hotel in San Diego, my dad started setting up my machine. Only…it wasn’t my machine. Since the lady took my ventilator bag, we took hers and had no idea at all that she took mine until we opened the bag. We were all so upset and shocked, and we didn’t know who to call or what to do!!

By God’s grace, my dad found a sticker on her sleep device with the sleep company’s contact info, so he called them the next morning, and they were able to look up her contact info by entering the serial number of her device. My dad got in touch with her, and she overnighted my machine to our hotel (we did the same)….but I still didn’t get mine for 2 days.

I slept terribly without my machine because I have central apnea which is much worse than the typical “obstructive” sleep apnea….with obstructive, the airway relaxes a little too much and causes snoring. But with central apnea, the brain doesn’t tell you to breathe. So anytime I started dozing off those two nights, I’d wake up, feeling like I was drowning and needing air.

That whole ordeal with the mixed-up sleep devices was so hard to experience, but we’re all just so thankful that I got my ventilator back (it is very expensive!).

Anyways, the one year follow-up appointment with my mito specialist went well.He and the fellow added all my genetic info to the North American Mitochondrial Disease Consortium (NAMDC) and the MSeqDR (another mitochondrial data resource consortium) which is helpful in case they find others similar to me. My mito specialist is a part of NAMDC, and once a month, all the mito experts talk about specific medical cases and offer input to each other. He hopes to bring up my case because he’s never had a patient with both Mitochondrial DNA Depletion Syndrome and Wilson’s Disease. Every time I see him, he tells me that I’m a puzzle and so rare.

I also asked him what the doctors learned at the UMDF 2019 symposium this past June, and he said they’re seeing/learning more and more how mitochondria are involved with inflammation. That was interesting to hear about!

One of the mitochondrial drug trials (called Elamipretide) is in Phase 3 which is the last of the phases before it goes to the FDA approval process. That means it’s doing really well since not many drugs pass phase 1! My doctor said that the patients taking this drug trial feel a lot better. Isn’t that so awesome to hear!? That is, it doesn’t cure them, but they’re not as tired, etc. That news gave me so much hope! It’s a subcutaneous injection, and my mito dr. hopes it gets FDA approved in 2 years! When I tell people that, they’re always like, “That’s so long from now!” But to me, that’s soon! I’ve been seeing my mito doctor for the past 5 years now which means I’ve been waiting that long for some sort of drug treatment. Being on this long journey, I’ve had to learn a lot of patience (and still am!)… I just can’t believe that I may soon get treatment that is something other than supplements!

Next year’s UMDF symposium is in Phoenix, and my mito dr. who’s helping plan it wants me to go! But, we’ll see..

It was so good to see my pain medicine specialist (my favorite doctor in case you don’t know) in Seattle on August 1st. Here’s my yearly picture with him.

He’s seriously the best and so caring! I’ve known him for 8 years now. Regarding the terrible neck pain that I have, my MRI shows that I have a congenital vertebral fusion (another defect I was born with), so I have cervical facet arthropathy from that. He wants my local pain specialist to do a cervical medial branch nerve block, but sadly, she’s booked out until September 19th…and that’s just the office visit to talk about getting it done, not a procedure appointment. He also suggested other pain medications to switch to since I’m getting tolerant to the one I’m on currently.

The hemangioma on the bottom of my foot has been getting even more painful, so I now have to tip-toe on that foot when I walk. I have a 2 hour appointment next week to see the vascular anomalies clinic at Doernbecher’s—the Dermatology, Interventional Radiology, and Plastic Surgery specialists are going to see me all at the same time during that visit.

On top of that, I’ve been experiencing bad dizziness for almost 2 weeks now, and my neuro physical therapist doesn’t think it’s the benign paroxysmal positional vertigo (I’ve had this in the past) which can be easily fixed with the Epley Maneuver. He thinks it’s centrally-mediated vertigo, so I had to tell my neurologist. It’s sadly not resolving yet, and my neurologist said central vertigo can last a long time.

Anyways, that’s what I’ve been up to….lots of traveling, doctor appointments, physical therapy, and lettering cards for Punkpost. Continuing to lean on the Lord because I’m so very weak without Him. He is my rock. And I really really love the Charles Spurgeon quote above that I lettered! So encouraging!

Thank you so much for continuing to pray for me! I’m so grateful and blessed!

P.S. That sure was a long post. In addition to not feeling the greatest (due to vertigo, pain, and other symptoms), this is another reason why it takes me so long to post blog updates…I have to take breaks when working on these posts (I also have to think a while about how to say everything, etc.), so thank you for your patience! Shoutout to those who made it to the end of this!!

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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.”