Keeping on.

Kerissa • October 6, 2017

Hey friends,

It’s been over 3 weeks since I last posted, and again, there’s so much to tell and to process.

But I will try to post an update for each medical specialty:

Podiatry~

On September the 19th, I had toenail surgery under anesthesia to correct the ingrown toenails.  Everything went well, but my toes are still bleeding/draining even now which means I have to continue soaking my feet in epsom salts.  It also hurts too much to wear shoes.  I have a follow-up with my podiatrist next week to make sure everything is healing well.

Pain Medicine~

The following day, my pain dr. performed a bilateral lumbar sympathetic nerve block to calm down the pain in both feet and try to prevent a CRPS/nerve pain flare-up.  After the procedure, I had to be monitored for a little while because I was so sleepy from the meds and my blood pressure got pretty low.  Thankfully, the block did help to prevent the CRPS from returning.

Otolaryngology~

On Friday the 22nd, I saw my ENT (ear, nose, and throat) dr. to follow-up on my swallowing.  Lately, food/liquid has been going down even before I swallow which causes choking.  So my ENT dr. said I’m experiencing something called “premature spillage.”  This is caused by a weak tongue that also doesn’t have good swallowing coordination anymore. He said the tongue is trying to tell the body that it’s too tired to eat.  All this is due to the mitochondrial disease worsening..  He said not much can be done for it, but he did refer me to the swallowing therapist.

Neurology~

I had an appointment with my neurologist recently to go over the EEG results.  Again, it’s abnormal in that it shows a lot of generalized slowing all over my brain which indicates “diffuse cerebral dysfunction.”  But thankfully, the whole body jerking I have during the day and especially at night is not caused by seizures.  She said this jerking (myoclonus) can be caused by a number of different things (brain, spinal cord, etc.), but there’s no way to know for sure where it’s coming from.  Since it disrupts my sleep, she prescribed a very strong anti-seizure medication which can also be used for myoclonus.  I started it a little bit ago, and I think it does help.

Physical Medicine~

I saw my physical medicine dr. this past Monday to follow-up on the back pain, osteopenia, etc.  I now have my spinal brace, and it feels good to wear it every now and then. Lately, my right shoulder has been snapping and popping a lot when I move it. I know I don’t post much about EDS (Ehlers-Danlos Syndrome), but it does continue to cause problems/joint pain.  He said these “subluxations” are stretching the joint capsule in my shoulder which is not good.  My shoulder is too loose from EDS… So he told me to be extra careful when I dress, move, etc.  He also ordered cervical (neck) spine x-rays to check up on my cervical instability since it’s been 3 years since they last checked.

Internal Medicine~

This past Tuesday, I had a 2-month follow-up with my PCP.  She is just so thorough and caring!  I am so blessed to have her oversee/coordinate all my medical care. We talked a lot about my upcoming surgery and how that will go with all my other medical issues.  She also wanted to know how I’m doing mentally because she knows that so many doctors often just take care of a certain part of my body and not the body as a whole.

Nephrology~

Unfortunately, the medication I tried for my renal magnesium wasting didn’t help at all. Really disappointed that my Mg level continues to be lower than it was in the past and that the medication didn’t benefit.  This means I continue to need 8 whole grams of IV Mg a day.

Swallowing Therapy~

I had a long session with my swallowing therapist for the first time this week.  She and the fellow evaluated my swallowing with lots of different food textures.  She had me work on several different swallowing techniques and exercises to try and help this “premature spillage” swallowing problem.  She doesn’t know if it will help, but we will at least try.  Some of the swallowing exercises are challenging!

Sleep Medicine~

Sadly, there are still no sleep study openings sooner than December.  So my sleep specialist this past Wednesday decided to try and order the new machine (called an adaptive-servo ventilator) for my bad central sleep apnea before the study and see if insurance will possibly cover it.  Please pray they will be willing to use only his chart notes for now to back up my need for this machine!

Urology~

Next week, I see my pediatric urology surgeon to go over the big surgery.  I also plan to ask her if she can possibly change my j-tube while I’m under anesthesia so that I don’t have to be awake for it when it does need to be changed.  *Side note: recently, my tube accidentally got ripped out of my abdomen (it got caught in a folding chair after I got up from sitting), and it was the worst acute pain ever!!! :’(  The balloon that holds the tube in place was still intact.  This meant the balloon which is bigger than the hole got yanked out of a tiny hole! It bled so much, and it was extremely difficult to insert it back in.  Tears automatically came from the severe pain.  And the area is still tender to this day. This is the first time that happened, and I’ve had this tube for 3 years!  I now have to use a feeding tube clip on my clothes to hold it up so that it doesn’t hang.*  So if my urology surgeon can’t change it, my PCP is going to ask if any of the pediatric general surgeons can replace it during the bladder surgery.

This weekend is my 25th birthday, and I know it’s only by God’s grace that I turn another year older.  I look back on being 24 years old, and I have to say, it’s been the hardest year yet mito-wise. Turning 25, I don’t know what will happen, but I do know that the Lord will be with me the coming year!  And that is such an encouragement.

P.S. I love this quote below! I’m just so thankful that my body (fighting mitochondrial disease every single day) won’t be like this for forever.  And it is only because of what Jesus did for me on the cross.❤

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. 🥹