Latest medical news.

Kerissa • June 9, 2019

Hey friends,

So hard to believe we’re already halfway through the year!

A lot has happened medically since I last blogged, so here’s a little update…  It’s been pretty rough lately. So I just wanted to thank you for continuing to pray for me.  Your prayers definitely keep me going.

About 2 months ago, I got diagnosed with hypoparathyroidism which can also occur with mitochondrial disease. I’ve been experiencing numerous symptoms—there aren’t really any good treatments for it, so I have to go back and see my naturopathic dr.  But I haven’t been able to see him yet for this issue because I’ve had TOO many other doctor appointments the past several weeks.

In addition, I started experiencing horrible neck pain, and I don’t know what’s causing it. The OHSU comprehensive pain center has become very holistic in the last 2 years, and they now offer chiropractic treatment (as well as acupuncture, massage therapy, and naturopathic medicine).  So my pain dr. is having me see a chiropractor on top of my regular physical therapy appointments that I have twice a week….but sadly, none of this seems to be helping my neck. My physical therapist has even been doing a lot of “cupping” on my neck/shoulders.

I have an appointment with my orthopedic doctor on June 17th, and I’m praying he will be able to figure out what’s going on.  It’s just been so difficult to deal with this new neck pain on top of all my other chronic pain.

And then, to make matters worse, for those who may not remember, I was born with a hemangioma (benign blood tumor) on the bottom of my right foot.  Well, growing up, it caused so much pain to the point that I couldn’t bear weight on it.

So, at age 17, I had it removed at OHSU Doernbecher Children’s Hospital.  Long story short, it’s now been 9 years, and sadly, it seems to be growing back. It’s causing so much aching, throbbing pain, and I can’t bear weight on it well.  My pain dr. thinks it’s wrapping around a nerve or pressing into it. :’(

I saw my PCP this past Monday, and he wonders if the surgeon wasn’t able to remove all of the “bad” cells then or if this is going to become a “thing” where I need surgery every 8-9 years…  So he is referring me to a surgeon to hopefully get this removed again..

I’ll always wonder why I (and none of my siblings) was the one to be born prematurely with this birth defect as well as the sinus defect near my ear (which was repaired when I was 10 years old).  I also always wonder why I’m the only one with mito….and EDS….and Wilson’s Disease….and mast cell disease, etc. and why none of my siblings are affected (as far as we know..).

I wish things were different….for example, it’s been 8 whole years since I graduated from high school, and I realize that I could have graduated from med school (one of my dreams!) this year if none of “this” happened..  But as you can see, my life had/has a different direction, so the only thing I CAN do is keep trusting the Lord with this wild journey.

I still have so many questions, but you know what?  The Lord continues to give me grace for each day and His peace amidst all this unknown.  It’s comforting to know that, even before I was born, He had a specific plan and purpose for my life.  I recently read this quote by Morgan Harper Nichols, and I thought it was so true: “You do not have to know what is going to happen in order to have hope.”  No matter my circumstances, my hope will always remain in Christ!  And I can do all things (whether it’s dealing with more diagnoses and more pain or having more surgeries..) through Him who strengthens me.❤

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Next month, my parents, sis, and I head to San Diego to see my mito specialist.  I have so much to update him on, and I look forward to hearing the latest on clinical trials since the UMDF (United Mitochondrial Disease Foundation) national symposium for 2019 is happening this month.  We’re also going to stay an extra day in San Diego (4 nights instead of the usual 3), so I’m excited to explore more!

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