Past Few Months.

Kerissa • November 3, 2019

Hey friends,

Just wanted to check in with a medical update. Thank you so much for your continued prayers for me! I’m so grateful. The past few months have been a little rough since I last posted, and I’ve had to just take it one day at a time and lean on the Lord for strength.

At the end of July, I doubled the dosage of one of my nerve pain medications because the small fiber neuropathic pain in my hands and especially in both feet/legs has been so very bad. :’( Doubling the dose helped the pain somewhat (a little relief was better than nothing), but then we found out that my blood sugars started spiking into the 170s and higher.

At first, we didn’t know what was causing the high sugars, and I had to get tested for diabetes. I was so scared I was going to have to add another diagnosis to my long list..

When we finally figured out the hyperglycemia was due to such a high dose of the nerve pain medication, that was a good news/bad news situation. I was so thankful that I didn’t have diabetes, but, I had to go back down on that medication, and since then, the nerve pain has been so terrible. It’s hard to focus, my feet BURN, and they feel like they’re constantly on fire. Haven’t been sleeping well, and the pain wakes me up. My pain doctor at OHSU said that small fiber neuropathy is one of the most painful neuropathies, even more than diabetic peripheral neuropathy and others like that..

I’ve had to take more opioid pain medication, and I wish I didn’t have to. I think I mentioned this before, but because of so many people overdosing on opioids in the US, the government is cracking down and making it harder and harder for people with chronic pain to have access to these pain medications. And my pain doctors are unsure of what will happen down the road for people who actually need these pain meds.

My pain dr. started me on a different nerve pain medication, but I have to increase it very slowly…and currently, this low dose isn’t helping unfortunately.

On top of all this, the vascular mass at the bottom of my right foot is making the pain even worse, and the surgery to have it removed got denied by my insurance. Not sure if it’s because they think this surgery is only for cosmetic purposes since my doctor is a plastic surgeon? So I’m still waiting for my insurance to authorize the surgery…they’re wanting to see more paperwork, etc.. And OHSU won’t let me schedule a surgery date until they know for sure that they will get paid for it.

My hypoparathyroidism is also worse (due to the mitochondrial disease)—my nails are chipping and I’m losing hair. With hypoparathyroidism, my body is also not able to absorb calcium and phosphorus well, so this is causing my osteopenia to progress. My endocrinologist doubled my calcium dosage and also wants more lab work done to see if I may need to take activated vitamin D (which is a prescription medication, not the vitamin D supplement that I also take)… She ordered another DEXA scan that will be done in March to check the osteopenia, and if it looks even worse, then I have to start an IV bone infusion. In the meantime, I did see my naturopath to see if anything else can be done for all of this, and he is having me take some homeopathic medicine. He’s not sure if it will help due to the underlying mitochondrial disease, but it doesn’t hurt to try.

I did want to share some good news—my GI dr. recently stopped my IV nutrition! Isn’t that awesome!? When I doubled that nerve pain medication back in July, it made me gain weight (my pain dr. said that weight gain is a common side effect). I gained 3 pounds. So my GI doctor wants to see if my weight will hold. I was receiving IV nutrition for almost 5 whole years. It’s always considered a last resort because of the many problems it can cause…it’s especially bad for the liver.. Anyways, my GI dr. said it can take at least 2 months before we know if my weight can hold… I will keep you posted!

While it is very nice to be off of the IV nutrition, I sadly can’t get rid of my central line because I still have to receive IV carnitine, magnesium, potassium, etc. for 8 hours every single night.. But, looking on the bright side, I’m so very grateful to God that I don’t have to be hooked up at all during the day (and lug an IV backpack around everywhere I move)!

Since I most likely won’t post another update this month, I just wanted to wish you a blessed (early) Thanksgiving. You are all dear friends and family to me, and I love you!! My heart is so thankful for you.

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August 6th Surgery Prayer Requests 💚

By Kerissa Lee • August 6, 2026

"God is our refuge and strength, a very present help in trouble." -Psalm 46:1

Another surgery 😞

By Kerissa Lee • July 25, 2026

Hi, friends, I thought I wouldn’t be posting for a while since I’ve been doing really well, but I’ve hit a bump in the road again and would appreciate your prayers. 💚 This past Tuesday the 21st, after nearly 12 years living with it, I had my jejunostomy tube removed completely. I thought it was going to be a simple process and that the stoma (hole) would close quickly within 30 minutes like they said. That didn’t happen, though, as the stoma started draining a ton! I couldn’t even leave the lobby and had to go back up to the clinic on the 8th floor to have an ostomy bag placed to collect all the small intestinal digestive juices that continually drained. Unfortunately, I’m experiencing a very rare complication called an enterocutaneous fistula. 🥺 I’m disappointed this is happening, but I’m not exactly surprised since my whole medical case with Mitochondrial DNA Depletion Syndrome has been rare from the very beginning.. I also don’t heal well due to connective tissue problems from Ehlers-Danlos Syndrome (case in point: my port site issues back in May when I had to have a new one surgically placed on the other side of my chest).. 😞 The clinic told me to keep emptying the ostomy bag and monitor the output. It wasn’t a fun 2 days. This whole process has definitely made me so grateful to God that I’ve never needed something like an ileostomy! TMI, but I lost almost a whole pound of fluid because so much was gushing/spurting out of the stoma every time I ate or drank. Losing so many electrolytes, I started experiencing symptoms of dehydration—weakness, high heart rate, and headaches. So yesterday, I had to go back and see the surgery resident who basically placed another j-tube (it was so painful again!). 😭 This is a temporary “plug,” and I’m bummed to say that I have to go to the operating room to have the jejunostomy tract taken down and the fistula repaired. This surgery will be happening as early as next week (it depends on my surgeon’s schedule).. She said it will be complex, especially because adhesions (scar tissue) form when a person has multiple abdominal surgeries.. I lost count what number this surgery/procedure will be, but I do know I’ve had more than 20! 😞 I know God is with me wherever I go and will supply me with the strength to endure yet another surgery like he always does. But, I’m still sad that I have to have more incisions added to my body. I shared the lyrics to this song before on an old blog post (the song is called It Is Well With My Soul by Matt Redman), but it immediately came to mind again when I was thinking of scars. As the song below said, it’s a reminder to me that my scars can be a testimony to others of God’s grace in my life and how he has brought me through every single pain and sorrow. In the Bible, I’ve always thought it’s so neat that Jesus still had his scars after he rose from the dead—he had a new body, and yet, his scars were still visible. ❤️ Our scars are a sign of grace in our lives Oh Father, how You brought us through When deep were the wounds And dark was the night The promise of Your love, You proved Now every battle still to come Let this be our song It is well (it is well) With my soul (with my soul) It is well, it is well with my soul

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! 🥹