Wednesday, June 12, 2024 – Day 14
I engrafted today! That means that my absolute neutrophil count is above 500.
Morning Labs | Afternoon Labs | |
WBC | 1.18 | 1.98 |
Hgb | 9.3 | 9.8 |
Plt | 19 | 27 |
ANC | .61 | not done in afternoon |
While I still have a long way to go, this is a HUGE milestone. What’s even more exciting is that I feel better today. I’m talking normally (the dietitian Sarah walked in today and said “whoa! I can hear you!”), and I drank some chicken broth today without too much pain. I even had some applesauce but it was a little painful because some of the dead skin in my mouth is sloughing off, exposing new flesh. Because I am feeling so much better, I also convinced my mom to go back to the apartment we’re renting to sleep there as she had previously spent the last week sleeping in the hospital with me.
Today also happens to be my mom’s 72nd birthday. She said this is the best present ever! Also, eight years ago, my dad had a liver transplant in NOLA on my birthday (June 30th). I’d say June is a big month for the Chen family.
Because I am starting to feel better, the next step is how to transition all of the medications I’m on from IV to oral at this point. Everything that I’m getting right now has been through my PEG feeding tube or through an IV. In order for me to leave the hospital, I have to be able to take everything orally. We went through a big list of drugs today and what a good plan might look like for the next week.
For all the pharmacy nerds, what we’re thinking for as we look into the future for *discharge!!*
- Acyclovir (HSV/VSV prophylaxis): oral suspension
- Cholecalciferol: oral suspension or just hold off depending on what my vitamin D levels are
- Entecavir (HBV reactivation prophylaxis): small pill that I can put in applesauce
- Letemovir (CMV prophylaxis): small pill that I can put in applesauce
- Loperamide (anti-diarrheal): oral suspension and PRN for diarrhea
- Prednisone (immune suppression that I was on prior to transplant): pills that we will need to taper off of. I cannot wait to be off of steroids. I’ve been on them for over 6 months and it has done a number on me.
- Mycophenolate mofetil (GvHd prophylaxis): this is the largest pill to swallow and will be last one we transition to oral
- Olanzapine (pain control): PRN for pain, nausea
- Ondansetron (antiemetic): oral dissolving table that I’ll try for tonight!
- Pantoprazole (GERD prophylaxis): small pill
- Posaconazole (anti-fungal prophylaxis): another big pill that will be one of the last to transition
- Ursodiol (liver protection): oral suspension
- Tacrolimus (GvHD prophylaxis): dose TBD on level but the pill is fairly small
- PCA (pain control): I’ve been weaned to fentanyl 5 mcg basal and 10 mcg bolus at this point. Tomorrow, we plan to discontinue the PCA entirely and use oral pain meds if needed. I promised the pain team that I would actually ask for pain medications because they noticed I was not pressing the button for pain meds as much as I was presenting with pain. I have severe hesitations with narcotics because they make me feel so crummy but I know pain control is really important for being able to rest which is important for my getting better.
- Tube feeds: as I increase eating, we will decrease the amount of tube feeds I’m getting. Currently, I’m getting all 1500 calories of “food” from tube feeds but today I tolerated applesauce and chicken broth.
I’m sure I am missing more and the legit BMT pharmacist will do all the teachings before I’m discharged, but it’s exciting to even think about that word. The discharge word wasn’t even in the realm of possibility last week.
We ended the night celebrating my mom and my family at the Airbnb and me in the hospital over FaceTime. I insisted that my mom go back and sleep in a real bed because she had been sleeping in a janky makeshift hospital bed the last week.
This is amazing news, Irene! So glad you are feeling better and even went for a walk (such an overachiever 🙂 ).
Congratulations on the counts and I hope you can get off the feeding tube soon as you start tolerating more food.
Happy birthday mama Chen!
Thank you!!
Wonderful to hear good news, Irene!
Hello to all your family, and happy birthday to your mom.
I love that “discharge” word. 🤗
Thank you!!
Happy birthday to your mom, Irene!
Congrats on getting some broth and applesauce down! Praying for you on this journey and eating more solid foods soon!
Thank you!!
Hi Irene! I’ve been wondering how you are doing, and I miss you at work!! Today I received the info on the GoFundMe page, and I also found your blog. I’m so sorry to hear that you are going through all of this. So thankful to hear the good news of your engraftment! You are so graceful and a pillar of strength!! Please keep up the good work on your healing journey. Sending prayers and friendship to you and your family. Take good care!!
Thank you for your prayers and positive vibes! They are all helping me get through this time period of my life!