Hard days

Kerissa • September 1, 2020

Dear friends,

Thank you soo much for your texts, prayers, comments, and messages on my last post.  I’m sorry I haven’t been able to respond to them, but please know that I am so encouraged and blessed by you. ❤   It has been a very hard past 6 days here in the hospital.  Wednesday night around 1:30 AM was so scary…..after I received my first bag of IV N-Acetyl Cysteine (and the nurse was starting the second dose), my heart rate suddenly started pounding/beating super fast, I got very hot/feverish, I felt like I was going to vomit, my chest was really tight, and I couldn’t breathe well.  At first, I thought I was getting sepsis again, but my nurse thought I was having anxiety..  I told her that I don’t have anxiety.  She then noticed that my ears were super red, she checked my skin and saw that I was very blotchy all over….it turns out that I was having a severe anaphylactic reaction to the NAC!   I was really disappointed that I couldn’t keep receiving this antioxidant but also thankful to the Lord and His amazing providence.  Before making the decision to get admitted, my doctor was initially going to have me try the IV NAC at home, but God knew I needed to be in the hospital.  He truly knows what we can’t see. ❤

Since that allergic reaction, it took so much out of me physically, and I’m feeling even worse than when I got admitted.   So very weak and shaky all over (it’s taking me many breaks to type this), the pain has been horrible (it was a 9 more than once and I cried so much ), and more.

But, my doctors have adjusted my pain regimen, and I can now receive IV pain meds every 2 hours, my lab work is looking better than before, and my right eye is not as droopy as it used to be (my left eye is not doing too well—I can’t look to the left and that’s causing double vision, but we’re praying it will get better with time..).

So much waiting going on over here…waiting for the pain to resolve…waiting for my strength to come back…waiting for my eyes to track better…waiting to go home…  And it’s hard not to get discouraged. But all of this has been a huge reminder to fully “wait for the Lord” in every single circumstance.

“I waited patiently for the LORD; he inclined to me and heard my cry.” – Psalm 40:1

“Our soul waits for the LORD; he is our help and our shield.” – Psalm 33:20

“O LORD, be gracious to us; we wait for you. Be our arm every morning, our salvation in the time of trouble.” – Isaiah 33:2

Thank you all for continually lifting me up in prayer during this bump in the road!   I am so grateful to God for you. ❤❤

P.S. Just an FYI, I lettered the verse above a while back, not recently…  Too weak now to even write my name with a pen (I had to sign my name yesterday for some paperwork that my mom fills out weekly, and it was so hard!).  This means no writing Punkpost cards for a while or hand lettering new pieces.

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
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
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. ❤️