Time.

Kerissa • May 19, 2017

Hello friends,

Last week, I had a follow-up with my neurologist.  I wasn’t expecting it, but she had a serious talk with me and my mom…  She told me that my mitochondrial disease is progressing, and because there’s no cure and no good treatments (except antioxidants, symptom management, etc.), she said there’s not much we can do except “keep me comfortable.”  I know I’ve been getting worse medically….I wasn’t this bad 2 years ago. But to hear my doctor tell me this was really hard, and I’m still processing all of what she said.  No 24 year old should have to hear their doctor tell you this.

She explained how our bodies “replicate” more and more mitochondria in order to continue living, but because of my bad mtDNA depletion (and the gene mutation that’s causing this which my doctors are still trying to pinpoint exactly), my mitochondrial DNA is getting more and more depleted as time goes on…

I don’t know what’s up ahead….but I will just keep doing what I’ve been doing the past several years and not give up.  Mito can take away so much, but what it can’t do is take away my hope in Christ.

I’ve been reflecting on Psalm 31 a lot lately.  There are a few verses that especially encourage me and help me.

“….But I trust in the Lord.  I will rejoice and be glad in your steadfast love, because you have seen my affliction; you have known the distress of my soul….you have set my feet in a broad place…

Be gracious to me, O LORD, for I am in distress; my eye is wasted from grief; my soul and my body also…

But I trust in you, O LORD; I say, ‘You are my God.’

My times are in your hand .

Be strong, and let your heart take courage, all you who wait for the LORD!”

~Psalm 31:6b, 7, 8b, 9, 14, 15a, 24

It’s so comforting to know that my times are in God’s loving hands.  Past, present, and future.  He sees my affliction and knows every time my soul is in distress (verse 7).  And He does something about it—He “sets my feet” firmly on the ground (verse 8b) so that I don’t stumble or keep falling from the heavy weight of this hard path.  So, as the end of this Psalm says, I will be strong and let my heart take courage after hearing this news.  I won’t despair.

________________

I said goodbye to my palliative care dr. this past Monday.  I so wish he didn’t have to go, but he’s leaving OHSU to become the director of the Serious Illness Care Program at Harvard which is a very prestigious position….my pain dr. told me that Boston was the first to start Palliative Care.

I was able to get a picture with my palliative dr. when I said goodbye.  I posted this on FB, but I know some of you aren’t on FB, so here it is..

On Tuesday, I had a follow-up with my pain dr.  My body has been becoming tolerant to my current pain med, and it’s not working as well—she said it’s good to rotate pain meds around every 3-6 months to prevent tolerance.  I have to soon start a certain med (which also helps pain) that is good for resetting the opioid receptors.

She also told me about a possible new treatment for my chronic intractable migraines which doesn’t involve medication of any sort. It’s this super cool non-surgical device that stimulates a specific nerve….kinda like a TENS unit but for migraines. We’re waiting to hear if my insurance will cover it.

Overall, this appointment was really helpful, and I’m so thankful she’s not going to move or leave OHSU!

Today I had my monthly follow-up with my GI specialist.  I lost more weight, even though I’ve been increasing tube feeds.  He said my oral intake needs to include more carbohydrates and fats, and he’s also adding an extra day of lipids (fats) to my IV nutrition.  I mentioned on FB how I threw up such a large amount one evening last week, even though I hardly ate or drank anything that day (I told him I was puzzled why I threw up so much without eating barely anything).  He explained that our stomachs make 1-2 quarts of stomach juices per day, and the small intestine is supposed to absorb it.  But because my small intestine (in addition to my stomach) is not working well, that’s why I just threw everything up.  He prescribed me another anti-nausea medication to take when my regular one doesn’t resolve the nausea.

Next week, my family and I leave PDX to travel to California!  My appointment with my mitochondrial geneticist in Pasadena is on the 25th and will last 3 or more hours. :O  This is my first time seeing him in clinic, although I have met him before at the UMDF symposium.  So grateful for his willingness to see me and go over all my gene mutations and variants of uncertain significance.  Praying he can offer some other types of treatments to slow the disease progression.

I’m excited to spend time with my whole family in sunny CA, too!

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.. 😕 
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.”
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. 🥹