5 years.

Kerissa • June 1, 2016

Well, guys, I beat my record for the most appointments in one month. I ended up having a total of 19 appointments this month, not 16 like I thought it’d be.. This month wore me out..

On June 4, 2011, I graduated from high school. June 4, 2016 is just around the corner. It will be 5 whole years since I graduated… 5 years. It’s hard. I’m still doing the same thing—seeing doctors, going to weekly appointments and physical therapy, taking numerous medications and supplements, sleeping 16-18 hours a day, hooking up to IV fluids every day and IV nutrition every night, and fighting this battle with mitochondrial disease and a whole host of other conditions.

I wish I didn’t have to sleep so much…I wish I could go to med school and become a physician…I wish I could get a real job…I wish I didn’t have to see doctors every week…I wish I could get off of TPN (IV nutrition)…I wish I could do something other than fighting mitochondrial disease every single day.

But you know, I’ve learned that the Lord chooses different paths for every person. And this is the path He specifically chose for me. I tell you, it’s not an easy path and I wouldn’t wish it on anyone. But with this journey, the Lord gives me hope with His many promises. He says in His word that He will never leave me nor forsake me. Romans 8:28 also tells me, “For those who love God all things work together for good, for those who are called according to his purpose.” That’s what I hold on to. I won’t have answers to all of my questions in this life until I see Jesus face to face, but until that happens, I will keep persevering. I want to bring Him honor and glory!

Last Monday I saw the Palliative Care doctor. It was a long appointment discussing my whole story, all the symptoms I experience, and the headaches/neuropathic pain I deal with daily. We mainly went over how to manage the chronic pain better and how to best coordinate all of my care with my numerous specialists.

The doctor is very kind and caring. He’s had mitochondrial disease patients, but he said they were never as bad as me. He spoke with the head of the OHSU Internal Medicine board to see if a new primary care physician can be found for me who knows more about mito and can potentially coordinate all of my care better. My current primary care doctor is great and is always helpful in referring me to other specialists, but she doesn’t know enough about my conditions since they’re so rare. The head of the Internal Medicine board suggested I see this doctor who is board-certified in both pediatrics and internal medicine. That means she’s a pediatrician and an internist—she works at Doernbecher Children’s Hospital and OHSU! She knows about mito which is a plus. Her schedule is booked out so I can’t see her until July or after.

Regarding the pain, we discussed all the different pain management options—oral meds vs. IV meds, what types would be good, etc. My complex case makes it hard since pain meds worsen GI dysmotility. As a trial, the doctor is having me try a combination of pain meds that are liquid instead of pill form. He wants to see if putting liquid meds through my j-tube can be absorbed better and faster. The IV route is a last resort since that would mean being hooked up to yet another pump continuously. He has been talking with my pain doctor, and they both think a long-acting pain med would be good to try if this trial isn’t helpful. Long-acting meds are heavy-duty, so I’ve been researching/comparing them. I also hope to discuss this more when I see both of them the end of June.

Last Friday, I received my final IV iron infusion. My blood counts were slowly creeping up, but unfortunately, they have dropped and I’m still anemic.We’ll see what my levels are this week..

This Thursday, I have a follow-up with my nephrologist to discuss the worsening hypomagnesemia. Still dealing with disabling muscle cramps from the low magnesium. And right after that appointment, I have my 19th MRI for the suspected hip labral tear.

The following Monday, I see the Orthopedics specialist to go over the MRI results. Praying the results help my doctors pinpoint the exact site of the hip pain!

“For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.” Romans 8:18

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Surgery Update 😊

By Kerissa Lee • August 21, 2026

Dear friends, I just wanted to thank you all so much for praying for me during my abdominal surgery on August 6th! 💚 All of your messages/emails really encouraged my heart! If you missed my previous post, I had to have an unexpected surgery to take down the jejunostomy tract and repair an enterocutaneous fistula (a rare complication from having a j-tube for 12 years). I truly felt your prayers, and the Lord answered so many of them as well! 🥹 My surgeon only had to remove about 1 1/2 inches of my small intestine which is great news! I was in the hospital for 4 days because my blood pressure was low and pain control was rough (it’s a long story, but pain management is complex due to a specific medication I take daily at home..). But aside from that and having an allergic reaction to the surgical glue, I’ve been healing well. Thank you again for praying!! God has been so faithful throughout this journey. I got a visit from my sweet foster nephew when I was in the hospital (2nd picture)! 🥰 I can’t wait until I can show you his face—he’s so adorable. 🩵 I’ve mentioned this before, but an important medication I take causes severe insomnia (still not falling asleep until anywhere between 3 AM-9 AM). 😞 But I saw my naturopath this past Monday, and she’s going to treat me for suspected cortisol spiking up during the night (which disrupts the body’s circadian rhythm). I’m thankful for the wisdom God gives her, and I’m excited to see if this treatment will help! It will take 6 weeks to see if there’s any benefit, but I first have to specially order it..

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