My Table was Ready 11.06.19

Here is where we are.

I was admitted to UCLA on October 24th, 2019, and listed for transplant five days later. On the evening of November 5th, three doctors walked into my room and told me they had found a match — a heart and a liver. They called it a dream come true match.

Surgery began November 6th. My new heart went in, and most of the liver transplant was completed. The surgical team let me rest for twenty-four hours, then went back in on November 9th to finish. The surgery itself, as strange as it sounds, was the easy part. Recovery was — and still is — a different story. Two steps forward, one step back, on a good day.

The average single-organ transplant patient spends about two months in the hospital after surgery. I had a dual-organ transplant and was discharged in ten days. I've since been working with another dual-organ recipient at UCLA whose recovery took fourteen days. We are apparently an unreasonable pair.

I don't want to dwell too long on how hard the hospital stay was, but I want to be honest about it.

There was a doctor, nurse, or technician in my room every seven to ten minutes around the clock. I had almost no privacy. Between the first and second surgery, I was brought back to consciousness to confirm I was neurologically intact — I remember pieces of this, mostly that I was restrained because I kept trying to pull out my intubation tube.

The last time I ate before surgery was the evening of November 5th, or possibly the morning of the 6th — I can't remember anymore. Either way, I wasn't allowed to eat for up to five days after the surgery. By that Sunday, I was in my room crying, telling my mother I didn't want to do this anymore. A transplant fellow came in, listened, and agreed to order tube feedings. That was the turning point — the hospital stay became bearable after that. By the end of the following week I was finally allowed to eat, and the feeding tube came out.

I woke up from surgery with six tubes placed around my chest and abdomen. They came out one by one over the course of ten days. My lungs needed to be coaxed back open, which meant walking as much as possible, doing a specific breathing exercise every hour, another three times a day, and — in the rare moments I had the room to myself — singing.

I went home with twenty-two new medications and a binder on transplant recovery. For the first eight weeks I was in constant pain. I developed tremors and involuntary leg movements. My thoughts felt like they were moving through fog. I couldn't lie down or sit up without help. My arms ached continuously — they had been hyperextended throughout both surgeries, and that pain took about three months to fully resolve. The involuntary leg movements eventually stopped. The tremors stayed.

Since coming home, I've seen the heart and liver transplant teams nearly every week. Blood draws one to three times a week. Eight heart biopsies. One liver biopsy. I had a mild case of liver rejection, which led the team to temporarily increase my anti-rejection medication — which made the tremors worse, caused rapid weight gain, and gave me what they cheerfully call moon face. The rejection resolved. Now the doctors and I are slowly, carefully working to bring the medication levels back down. Because of how the drug works, and because no one wants to risk rejection again, slowly is the only option.

At every stage of this process, nothing has moved as fast enough.