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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!

Letter to my GI specialist 💚

By Kerissa Lee • March 31, 2026
Dear Dr. Phillips, There aren’t enough words to express how thankful I am to have had such an amazing GI doctor like you these past 13 years. I think of all the hard challenges that have happened starting at age 20 and beyond: experiencing GI dysmotility, not being able to eat “normal” foods without terrible abdominal pain/distention, only tolerating soft consistencies like baby food pouches (which was not fun as a 22 year old!), needing an NJ tube placed down my nose, having a jejunostomy tube surgically placed, then no longer tolerating tube feeds, dropping down to 77 pounds, getting admitted the day after Christmas to start TPN, being surprised by the extremely high copper levels on my liver biopsy and starting treatment for that, going through septic shock which caused ischemic hepatitis (remember when my liver function test was 1674!), having sepsis 5 other times from multiple central lines and ports, requiring urgent surgery to remove my gallbladder, needing D10 added to my IV fluids for numerous mitochondrial crashes, and much more. Through all the highs and lows, you were there for me, and I truly feel like I hit the “doctor jackpot” to have had a GI specialist as caring, compassionate, knowledgeable, and kind as you. I shed quite a few tears to my chagrin at my last in-person appointment with you in February 2026, and I still do as I reminisce and write this letter. But, they aren’t just tears of sadness. They are also tears of gratitude—I know this journey would have been much more difficult if I didn’t have your wonderful care and support all these years. I’m so happy that I was able to get off of TPN back then after 5 years of being on it. Not only that, but I’m so thankful that I can eat orally to my heart’s content without pain and abdominal distention. I know that’s in part due to you, so thank you. From the bottom of my heart, thank you so very much for caring for me. I will never forget you, and I wish you all the best as you start your retirement. :’) With immense gratitude, Kerissa

J-tube update

By Kerissa Lee • March 17, 2026
"God is always doing more than we know, working toward a good we will one day rejoice in." -Lysa Terkeurst

Please pray ❤️

By Kerissa Lee • March 7, 2026
Hi, friends, I would really appreciate prayer. Some of you already know this, but at the end of January, I started dealing with an abdominal abscess right next to my j-tube. I looked back through my records, and that was my 6th abscess. :( Since then, it’s sadly been one issue after another. I won’t go into all that has happened, but I’d especially love prayer for my j-tube site. After the abscess, I had my tube changed to a new one on 2/27. The surgery nurse practitioner decided to try the next size up to see if it could possibly decrease some of the leakage, but unfortunately, that was the wrong decision. It’s too large, so now the site is leaking tenfold compared to my previous size. The small intestinal fluid that keeps leaking out around the tube is full of acid which is burning my skin and making it raw. 😭 If you want to know what it feels like, imagine having a bad burn on your skin…then, on top of that, imagine acid being poured onto the burn every hour continuously. That’s how much pain I’ve been in, and I haven’t been able to sleep very well until after 6:30-7 AM each night because the burn is so intense! :’( I could cry, and I have—that’s how bad the pain is… I would show you a picture of the site but it’s not pleasant. 🥺 I’ve been emailing the nurse practitioner every single day, asking to have the tube changed back to the previous size. She hasn’t been helpful. I’ve tried all of her recommendations, but they aren’t fixing the root cause. I had to get an x-ray with contrast earlier today to check tube placement. If she does eventually agree to have the tube changed, I don’t know how I’ll bear the pain of the procedure… Remember, they don’t use sedation for these procedures (my GI specialist is shocked they don’t!), and even though I’ve been asking for lidocaine to be injected for past tube replacements, how do I bear to have needles pushed into such raw tissue?! 😭 Please pray that I will be courageous and strong in the Lord. I think of the verse from Philippians 4:19, and it’s comforting: “And my God will supply every need of yours according to his riches in glory in Christ Jesus.” He will grant me the peace and strength I need to be brave. His grace is sufficient. ❤️