Postponed again.

Kerissa • March 17, 2018

Hello friends,

My family and I recently got back from an amazing vacation in Orlando, Florida!  I shared this on FB, but for those who didn’t know, a very kind friend and his wife wanted me to “make a wish,” so I chose Disney World/Universal Studios since I’ve never been there, and my family and I all had the most wonderful time!!!   The weather was so beautiful, the food was amazing, the parks, rides, and shows were all so very fun, and it was just so nice being able to get away from weekly doctor appointments and all things medical-related.

Anyways, this past Wednesday was supposed to be my big surgery, but it got postponed AGAIN.  I’ve had central vertigo for almost 2 whole weeks now, and it has never lasted this long. It makes my head feel awful, and the medication that calms it down makes me so exhausted (it’s a benzodiazepine).  Also, my prealbumin blood level (which shows nutritional status and how well a patient will heal) dropped down to 18 even though it got up to 22 at one point, and my surgeon said it NEEDS to be 20 or above in order to do surgery.

I can’t remember if I ever mentioned this before, but there’s been a TPN (IV nutrition) shortage because one of the main places TPN is made from is Puerto Rico..  They’re still recovering from all the hurricanes, etc., so because of the shortage, my IV protein had to be decreased by 10 grams per day.  That is one of the reasons why my prealbumin dropped.  My dextrose (sugar) also had to be taken out of my IV magnesium bags because they’re short on that, too.

So, I made another appointment with my surgeon to discuss the new plan once again.  She’s booked out, so it’s not until next month..

I recently saw my orthopedic hip surgeon, and she thinks my right hip labrum is torn (my left one tore in 2016, and I had to have surgery for it…recovery took a whole year unfortunately).  My right hip has been locking, getting “stuck,” popping, and causing a lot of pain with certain movements.  So I have to do more physical therapy and get a diagnostic ultrasound-guided hip steroid injection into the hip joint soon.  Once I fully recover from this other major bladder surgery, I have to get a hip MRI arthrogram, and if the scan confirms that the labrum is torn, then my surgeon will have to perform surgery to repair the labral tear. I just can’t wait until I have a new body in Heaven!

I will keep you posted when my bladder surgery gets rescheduled and what my surgeon plans!  I will also try to keep the updates going when/if anything new comes up..

P.S. Not sure if any of you have noticed, but I haven’t blogged as often like I used to because I’ve gotten side-tracked.. I now hand letter pretty much every single day, and I love it so much!!  It’s just the best!!  I’ve also been doing custom orders!

 

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. ❤️