Long overdue update

Kerissa Lee • June 27, 2023

Hello, friends.

It has been so long since I last wrote. To catch you up on what happened after my blog post in April, my port site was unable to be accessed due to a severe allergic reaction to the surgical glue on my incision. For those who don’t know what a port access is, a large needle is inserted into my port implant. This needle has a catheter attached to it so that IV bags can be infused through my veins.


Anyways, because my port couldn’t be accessed, I was going several days without my nightly IV infusions/medications. So the doctors instructed me to go to the ED to receive a temporary PICC line. I was super bummed about that because 1. the skin on my arm never tolerates a PICC line well and 2. I had to wait more than 8+ hours in the ED due to how busy they were. 😭 But, I was finally admitted overnight, and the IV therapists placed a PICC the next day.


In early May, my port site was healed well enough to have my PICC line pulled and my port accessed once again! Sadly, the port catheter under my chest got kinked (a rare complication) which makes it hard to flush my line with saline/heparin. If the kink gets even worse, I’ll have to undergo a port revision surgery. 🙁 Taking this day by day, and I’m so thankful the Lord has been helping me through all of these issues. ❤️


Due to having sepsis in February, I had to postpone the surgical repair of my torn hip labrum on the right side. I was going to wait until sometime next year, but my hip has been bothering me a lot lately. So I have an appointment with my hip surgeon in August (she’s sadly booked out).


Still dealing with numerous migraines/headaches caused by my mitochondrial DNA depletion. But I had a virtual follow-up with my headache neurologist in Seattle recently. I’ve been trialing a combination of medications/supplements, and they help somewhat but not enough…so we’re going to try and substitute two of the meds with a different one.


Since so many of my doctors are booked out until August and beyond (GI, Pulmonology, Pain Medicine, Sleep Medicine, Orthopedics, etc), I don’t have a ton of appointments in July. I wish I didn’t have to wait to see my doctors.


But whenever I have a hospital stay, it always puts things in perspective. Being really sick and weak on a hospital bed reminds me of the things I often take for granted: stable health, strength to attend physical therapy and appointments, eyes that don’t have to battle nystagmus (which always becomes debilitating when fighting sepsis), time spent with my family/friends, etc. These are huge blessings from God. So even though it’s not fun waiting several months to see different specialists, I thank Him for this “slow” period coming up next month and the chance to do things I wouldn’t usually have as much time to do. ❤️


Until next time! 🥰

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. ❤️