I did not want to get a liver transplant, but it was the path I was heading down. In 2024, I was off chemotherapy for most of the year. In October 2024 I had a small tumor pressing against one of my bile ducts causing my total bilirubin to be at 2.5 mg/dL. On top of an Alk phos of 480 Units/L, ALT of 215 Units/L and AST of 146 Units/L. My liver was in bad shape from treatments and surgeries. I already covered my path to transplant in my “Last Three Years” post, so please read that first.
It is now the first week in July of 2025 and I got my third liver offer. You probably figured out I’m getting a cadaver liver. The choice was not really given to me at this transplant center, but I wanted to stay away from a living donor anyways. While the chances are very low that something could happen to the donor during surgery, I was not sure I could live with myself if something did. This was a personal choice, but I fully support living donors to save lives.
I was admitted to Barnes Jewish just before 10pm. The nurses came in to check my weight and then started an IV. One nurse drew more vials of blood than I thought my body had. Next was an EKG, chest x-ray, BP and a virus test. With my heart rate and anxiety running high, I got to sit and wait for the test results. It seems like the wait was for hours because I had so many questions to ask and there are many unknowns. I was calmer this time after going through the process twice already on failed liver offers. The surgical team had already gone home for the night, so the resident was the first doctor I met with that night. She had reviewed my blood test results and paged the transplant team because my PT INR was high. INR was 8.1, so she started me on plasma infusions. The order was for 4 bags of plasma, but I only got 1.5 in me before being moved to pre-op. I finished the last of the second bag of plasma while meeting all of the team that would help with my surgery. At 6am, the head of surgery approved the donor liver. I was moved into the OR and it was lights out for the other plasma and blood infusions.
I woke up in ICU around 10pm with a feeding tube in me. I was told I asked the ICU nursing staff 17 times if I got a liver. I only recall asking once. I was so afraid I would be opened up in surgery and cancer would be found outside my liver, disqualifying me from a transplant. I do not remember a lot of the first night.
My first morning in ICU went well. I was sore all over but managing the pain well. About midday the feeding tube was removed, and I went on my first walk. In ICU, the monitoring equipment is not very portable. Going on walks was very hard. That night the catheter was removed. Standing up and peeing in a bottle with a nurse holding you, is awkward. After 5 minutes, I began to flow.
I only spent 2 nights in ICU and 2 nights in a general room before being released. Normally you spend 3 nights in surgery recovery after ICU. I was up and walking around so much I guess they released me at 4 days instead of 7. All of labs were stable as well.
Although I was released in 4 days, I was asked to stay in St. Louis for 6 weeks. The transplant apartment the hospital offers was full, so we rented an apartment just a few blocks from the hospital. Home health came to our apartment once a week for blood draws and I had a doctor’s appointment at the hospital outpatient building once a week as well. I was sent home from the hospital with antirejection drugs, antiviral medications and antibiotics to name a few. The lab results for the week allow for the doctors to make medication changes and to see if your body is rejecting the liver. Liver rejection is another worry I had post transplant. My tacrolimus level would go high with my kidney function, so it took a few weeks before they got tacrolimus right.
It was very hard getting around the apartment for the first couple of weeks, but each day got better. I was in very good shape and moving around fine by the 6th week. It took about 7 weeks before I could sleep on my side again. I did not want to overdo it on pain meds while out of the hospital during those weeks, but I think I should have just used more. Not to mention the high dose of steroids I was on, and pain was not a great combination for my endearing personality. Overall, I got to enjoy St. Louis a little during those weeks but was glad to go home and sleep in my own bed when the six weeks was over.
I received my pathology report back a couple weeks after being released. It confirmed my liver was in bad shape and still had viable metastasis. It gave me confirmation transplant was the right way to go. It is the middle of September 2025 now so I will try to post a transplant update in a few weeks. I was released from the surgery consult team and will now be followed by the GI department.
