Under the weather

Kerissa • December 8, 2016

Hey friends,

Just a short update.  Since the day after Thanksgiving, I’ve been sick with low-grade fevers, a painful sore throat, swollen glands, a barking cough day and night, and terrible fatigue.  The doctor thought at first that it was a bad virus, but now he believes I have a bacterial infection in my throat (basically “strep,” but caused by a different bacteria…not the streptococcal bacteria).  He said I’m immunocompromised….this is because of mito. So he prescribed a week’s worth of antibiotics and codeine cough syrup.  Still not feeling any better yet, but it might take several more days..  I’ve been completely exhausted.  I just don’t have enough energy in the first place to fight these types of things.

I had a follow-up with my GI specialist last week.  The end of this month marks 2 whole years of being on TPN (IV nutrition).  So hard to believe.  We talked about taking a TPN break, but after much discussion, it’s just not really possible at this point because of my bad hypomagnesemia (he said “I’m the black hole of Magnesium….”), low blood sugars, continued GI dysmotility, and other problems from mito. I’m disappointed but will keep persevering and trusting in God’s sovereignty.

I’m really trying to increase my tube-feeding and not just do it one time a week…  If I can eventually receive a large enough volume total each day, then we can maybe talk about a TPN break!

I had a bilateral lumbar sympathetic nerve block scheduled this afternoon, but I had to cancel it because I’m coughing way too much. God in His providence worked things out, tho!  My pain dr. had to reschedule anyways, and it got moved to next week.  So thankful I don’t have to wait many more weeks for it to happen.

In addition to the nerve block, I have a lot of appointments coming up with Palliative Care, Neuro-otology, Internal Medicine, Nephrology, and Physical Therapy.  I’ve had to cancel PT for 2 weeks now.  My hip and muscles are all super weak from being sick…progress keeps getting set back.  But I’m so grateful for my therapists who continue to work with me, despite my complex medical case!

Until next time!  Have a wonderful and blessed Christmas, friends.

 

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. ❤️