My last post about recovery after the transplant ended with my 1st check up at UCSF on September 26th. After that I was re-admitted to UCSF and my 2nd check up was pushed back a week. I’m finally sitting down to explain what happened.
BUT FIRST…SMALL VICTORIES
It was 12 days after transplant that I was able to lay flat on my back without feeling an uncomfortable tug in my abdomen. It was glorious.
It was 23 days after transplant when the tape covering my incision finally fell off. Having loose bits of it flapping around was maddening.
As I mentioned before, my body was immediately liquifying and expelling anything I ate. The stomach pain was, as I said before, like being in the early stages of labor.
When you're hospitalized but not 100% sure you need to be…. I was readmitted to UCSF yesterday because of diarrhea and vomiting. I'm quarantined (contact restriction) for standard C-Diff precautions (but no one really thinks I have it). Had a CT scan to rule out a bowel obstruction (don't got one). Staying a second night to rule out infection. Like I said before, I'm glad UCSF is so thorough with their donor's post-transplant health. 👍🏼Better safe than sorry. But I reserve the right to not enjoy being plugged back in to the IV, the hospital smells, being away from my baby, etc. And my TV remote doesn't even work. 😂So here's to going home tomorrow morning! 🙏🏻
After my first check-up I had a two-day reprieve. Then, on Thursday Sept 28th, it started again. Liquid diarrhea, tear-inducing cramps, and then, at midnight, some vomiting.
I had clear instructions that diarrhea + vomiting = call UCSF. So I did the next morning. They wanted to make sure I did not have a bowel obstruction or some nasty infection like C. diff.
This is why I was readmitted to UCSF exactly 2 weeks after the transplant. I admit, I felt like this was pretty sucky.
Because I was dehydrated, I got an IV for that. Yay needles.
Because of the possibility of an obstruction, I was marked NPO. That means I could have nothing to eat or drink. Not even water.
Because of the possibility of C. diff, I was on Contact Precautions. That meant I couldn’t leave my room without completely changing my gowns and no one could come in without putting on gloves and a gown.
Oh, and my 2nd day there, a rash showed up around my incision.
Just a Stomach Bug
So after my CT scan (I’ve had 3 now in the past 17 months and I’m learning to hate them) proved I did not have an obstruction and my stool sample proved I didn’t have an infection…the consensus was I’d just had a nasty stomach bug.Two nights in the hospital for a stomach bug. Kind of funny. Kind of not.
I am SO THANKFUL that the transplant team at UCSF took good care of me and did all.the.things to rule out the scary stuff. They did, however, find a small collection of fluid in my abdomen they wanted to “keep tabs on”.
One of the doctors brought up my CT scan results on the computer in my room. It was fascinating to see him “scroll” through the layers of my abdomen. He showed me how my intestines have filled up the space where the right lobe of my liver used to be. Kind of neat. Kind of disturbing.
2nd Check-Up + Ultrasound
I was discharged on Oct 1st, so my 2nd check-up got pushed back from the 3rd to the 10th. This way they could see me after my body had a little more time to…stabilize…and that fluid pocket had time to absorb.
With my bowels playing nice, the rash took over as Supreme Torturer. It burned and itched so bad it was all I could think about. They gave me an anti-fungal prescription lotion to apply twice a day for two weeks. I had to take Benadryl in to fall asleep.
The upside to the extra-long stay was getting more time to hang out with my cousin. It was cool to get to know him better. Also, it was weird to look at him and realize that a piece of me was inside his abdomen. As a bonus, the opportunity came up, organically, to use the “What am I, chopped liver?” line.
Our appointments at UCSF were on the same day, so we went together. For my cousin, he got his drain removed (a big recovery milestone for him) and a glowing report that his lab results were better than expected! Seeing him walk around, looking healthier than ever was an absolute joy.
For my check-up, the ultrasound indicated my liver looked fine and the fluid pocket was gone. Yay! My labs also looked good and I was basically given the clear to go home to Oregon.
ULTRASOUND NOTE: Typically, the ultrasound happens at the 2 month mark. Why? Because they should be able to confirm your remnant liver has regained most of it’s original volume. However, as I live out of state, they agreed to do it sooner so I don’t have to go back to UCSF. I can get my lab work done locally and, as long as everything looks good, they don’t need to see me!
24 days post transplant – what exercises CAN I do? How about banded side steps? Or penguin walks. Or whatever you want to call them. I know my glute strength could use some improvement. It may be another month before I get back to running (notice the tank?) but little exercises like this will make it easier to start up again. 👍🏼
Recovery Guidelines & Cautions
Knowing that I was heading back to Oregon, the Nurse Practitioner and I reviewed some of the Dos and Don’ts going forward.
- My 10lbs weight restriction is still in effect until the 2 month mark (November 15th). No hernias, please!
- Blood clot risk is still a thing as well, so no birth-control pills and she gave me medical compression socks for my road trip home.
- Speaking of birth-control, don’t think about getting pregnant until at least the 6 month mark. And yes, we have been thinking about a possible baby #2.
- Exercise-wise I can do arms and some leg work. But again, I need to wait until the 2 month mark before doing movements that require more core muscle recruitment than typical standing/walking.
- When I do start back to running and lifting things heavier than 10lbs, I need go super easy and build slowly. I’m an expert at that by now so, no problemo.
- No alcohol for 3 months. Just in time for Christmas.
- Food-wise, I can slowly reintroduce dairy and fats and see how my body responds. But with all the tummy troubles I had…it was best to stick with bland, non-gassy foods and small, frequent, high-protein meals.
That’s it for now. Next time I’ll share about recovery at the 1 month mark and the healing power of sleeping in your own bed.
Thanks for reading, supporting, praying, and letting us know you care!
If you haven’t yet, consider pitching in a little bit on my cousin’s GoFundMe page. This helps him and his family with their ongoing, out-of-pocket costs.
I still have kNOw Greater Lover t-shirts on Etsy. However, I think my costs are covered at this point. Which is a huge testament to God’s provision and the generosity of you guys, our family and friends.