Priorities

I don’t know where my priorities have landed yet for this next part of my life.

My short-term priorities are pretty simple: eat well, sleep, drink a lot of water, and move around and walk when I feel up to it. I do what I can when I can and try not to plan to far ahead.

When I first got sick and started looking up end stage liver disease, I figured my life was over. A liver transplant sounded impossible and scary, but I was getting worse every day, so the idea crept closer with each doctors’ rounds. People didn’t survive those, or for very long, I thought. How could I possibly be so sick that this was happening? I wasn’t worried about work or making money. I tried filling out life insurance applications online in the hospital, but could never figure out how to complete them with my eyesight getting bad. But that obviously wasn’t for me—that was for other people when I was gone.

Early in my stay at the hospital a nurse asked if I would like to be resuscitated if there was a problem, and I said no. One of my sisters quickly corrected me, and I said yes after she caught me. My immediate reaction was that it wasn’t worth it, and this was likely my time. After my liver transplant, things looked more promising, but I felt so bad physically because of anemia, kidney failure, ascites, and other issues, that I couldn’t work or do much thinking, reading, or planning for anything beyond the next hour. The likelihood was that I would either be in bed, sleeping, for most of the day, or at dialysis.

I didn’t feel very good right after my kidney transplant, which happened about three months ago. I had some soreness and tightness, likely because the surgery was in my midsection. It’s a lot to manage—I had a new kidney, an eight-inch incision in my stomach, and a stent in my bladder. Dialysis had run my body to the edge, and I was about a dehydrated as you can get, and skinny because I was nauseous most of the time. Once I started to adjust to more normal body functions, I had the medications to contend with. It has taken me a long time to adjust to the side effects, which make my vision blurry, make me tired, make my stomach cramp and hurt, make my arm and leg muscles cramp and ache, keep me awake at night, and sometimes make me a little manic. Kind of like with everything else, I wonder if these things will get better with time, or if these new friends will stick around? Usually, the medications lessen over time, and the side effects, though last time we tried that I had a kidney rejection, so I’m weary when we try to lower my doses, as are the doctors. I’ve been told that I’m “sensitive” and “someone they need to watch carefully”—not a good place to be.

I’ve worked in book publishing since I was in college, and loved many parts of it. When I moved to California, I started working freelance, taking on all kinds of editing and writing work. I worked for big publishers still, as well as people who wanted to publish their own books or wanted to get them ready to submit to publishers. It was always interesting, and it was great while I was taking care of my mom when she was sick. I could hang out with her and edit a book while she watched NCIS.

A few months after my liver transplant I was on my transplant group’s monthly video meeting, when someone who had a transplant several years back started talking with someone who had either just had one or was hoping to have a transplant soon, and talked about how many people who have a liver transplant end up retiring or do something else afterward. There were so many things going through my head at the time that I set this aside for later thought. I figured it wouldn’t apply to me—most liver transplant patients must be older and really sick, so they’re already close to retiring anyway. They’re in a different place in their lives. I’m only 45, and expecting to be back to normal.

What I think she meant, but I hadn’t come to understand yet, was that after a life-altering situation like that, your priorities may change, and you might not want to do what you were doing before. I understand that now. I had two books come across my desk recently, and part of me was excited to take one of them on to have a challenge. At the same time, I’m not sure if that’s what I want to do now.

I see things differently, at least I think I do. I’m a bit slower. I like to sit in the yard and watch nature going on around me. I like to talk to people, sometimes even in the grocery store. I have a lot more patience than I used to have. I’m not always able to get up and do much physically, but when I do I think I’m a little more thoughtful, a little more purposeful.

Could there be something for me to pass the time that’s more fulfilling, and maybe more helpful for the universe, than what I was doing before? I may have many more years left, and I want to do as much as I can for as long as I can.

My priorities have shifted, but I think to where is still a question. So far I’ve held off on doing any book work since I got sick, about a year-and-a-half, primarily because my vision has been so bad—my glasses sort of work, and my contacts work better, but words can still be blurry because of the high doses of rejection drugs. It’s finally improving, though.

An author I worked with a couple years ago emailed me a few days ago and asked if I would work on his new book. He knew I had been sick and was very kind with his request. It’s not a huge job, but it would be nice to work on something, and I know him. It’s not about the money—this actually sounds like an interesting project where I’ll learn something. I told him I would do it, and he should be sending me the manuscript in a couple weeks.

Maybe there’s a different way to use my skills. A few years back I worked freelance for a podcast company, researching and writing podcasts, which was different and fun. Whatever I end up gravitating toward, I still need some time to get myself back up and running. A lot has happened, and I’ve been feeling better for just a couple of weeks. I don’t know yet what I can handle. I don’t know how much I want to do. I’m not supposed to be around a lot of people right now because of the immunosuppressants, so any work would need to be hybrid or remote. And how much could I even be awake during the day?

One thing I’m able to do right now is write my own experiences, and what I’ve learned from my doctors and other LT patients.