Nobody knows if my current liver will make it to next week.
Left photo by Iris Muis; right photo by Vinny Vlemmix
A version of this article originally appeared on Tonic Netherlands.
Screaming loud enough that everyone else in the hospital can hear you isn't usually my style. But this was an exception: I was in an insane amount of pain. In the post-operation recovery room, nurses had to tie me to my bed so I wouldn't punch them in the face. I'd just undergone a liver transplant without virtually any anesthesia. Now, however, they were giving me enough morphine and ketamine to put an elephant to sleep. Looking back on that moment, my response made perfect sense. I felt all of it, and it was hell.
That was three months ago, after my second liver transplant within one year's time. I've finally been able to go home to recuperate, and I’m starting to become more aware of what I went through.
I was born with biliary atresia, which basically means that both my liver and biliary system barely work. The gallbladder—a small, pear-shaped pocket that sits underneath the liver—temporarily stores bile, which the liver produces. When I was a baby, my gallbladder was blocked so doctors removed it. Bile helps to digest the fat in the food we eat, but my bile piles up within my liver because it has nowhere to go. This can cause liver infections.
In the Netherlands, only ten kids a year are born with my disease. Most of them receive a liver transplant at a very young age. Because liver cells die off as time goes on, the question is never if you’ll need a transplant, but when you’ll need it. My entire life, I’ve known that this moment would come, but I’ve been very lucky because I always had a lot of energy, was able to play sports, and participate in pretty much anything—the only difference between me and other kids was my regular medicine intake and the fact that I could never, ever drink alcohol.
After I turned 18, I started to get sicker. I started going to college to study French, but had to quit because I was tired too often. The year sucked anyway because my parents had split up, so I thought my fatigue had something to do with that. I decided to make a fresh start with my second year of college, but I was too weak and had to stop again. When I collapsed at work and my mom saw that the whites of my eyes had turned bright yellow, we knew something was amiss. Jaundice is a sign that something is wrong with either the liver or the biliary system.
I had a MRI and the doctors told me my liver was functioning at about 20 percent. I needed a new one immediately. The Groningen University Hospital—the only hospital in the Netherlands that has a lot of experience performing organ transplants on young people—screened me from head to toe for tumors and infections. After the operation, I would be immunosuppressed, so it’s important to go into it being as healthy as possible. After that screening they gave me the green light and put me on a waiting list.
In May 2016, my father suddenly passed away. Exactly one month later, the hospital called me in the middle of the night to tell me they had found the perfect donor. Eight days after I got my new liver, I was released from the hospital. People usually spend anywhere from three weeks to three months in the hospital after a transplant.
I was recovering quickly and I was even able to go to the Lowlands music festival at the end of the summer. I had so much energy—I felt reborn, like I was truly starting over. In September I went back to college, this time for social work.
Then, in February 2017, everything went completely and utterly wrong within one week. Doctors still don’t know why, but my liver started failing. It happens.
I was completely yellow again and people would often call me out on the street, saying things like: "You’re so yellow, with your ugly face paint." The remarks were so stupid that I wasn't compelled to respond to them.
My condition was deteriorating, but I still went to the Down the Rabbit Hole festival in June. In between acts I often went back to my tent just to rest. I knew that I’d be in the hospital again before long, so I wanted to have the kind of summer that would give me energy when I looked back on it. When I got back from the festival, I couldn’t even stand upright. I had run myself into the ground. In August 2017, I was put on the waitlist for a liver donation once again. I thought my turn would come soon because I was number one on the list, but livers come in different sizes and you need to wait for the right match. Time went by excruciatingly slowly. I spent every day waiting, hoping it would finally be the day.
It’s still weird to think about someone else dying so I could stay alive. Recently, the Dutch parliament talked about whether or not to pass a new law regarding donor organs. Under this law, every adult above age 18 would automatically be a donor, unless they are ill or otherwise unfit. I hope the law passes, because so many people die unnecessarily due to long waiting lists. Out of all the kids with my disease, 8.4 percent of them die while they’re still on the waitlist. In the US, it's only 3.2 percent.
I like being a donor because my body could potentially save eight lives, but I understand why some people don't like the idea of it. Some are scared whereas others won't do it because it goes against their religion. But if someone argues that they don’t want to be a donor because they want to look put together when they're lying in their coffin, I’d love to talk to them to find out exactly what they mean. Skin, for instance, is only taken from the upper thighs, so you don’t even see it. I think the Dutch government should focus more on informing the public about the ins and outs of organ transplants.
When I was on the waitlist for the second time, I researched my own chances of survival for the first time. Before, during, and after the first transplant I didn’t even think about that. I felt so sure that everything would work out.
Ten percent of donated livers stop working after the first month and 20 percent become useless within the first three months. After five years, the donated liver still works for 66 percent of people. To me, that percentage is low. I thought I was young and resilient enough to spend my whole life with one donor liver, or at the very least thought it would help me for 10 years or so. I never expected I'd need a second transplant within just one year.
I experienced a horrific liver transplant operation on November 11, 2017. I felt the entire surgery because the medication I was on blocked both the anesthesia and painkillers. The doctors didn't figure that out until after the fact. I've never yelled the way I did during that operation. I also had to go back into surgery two more times following the initial operation—the first time because of a leak in my biliary tract and the second to fix a blockage in the main artery of my liver.
Over the past few weeks, I've woken up every morning with the sense that I was dying. I wasn't afraid; I just felt like my body wouldn't make it to the evening. At some point, a psychologist was at my bedside right before my second surgery, and said: “I hope I see you after the operation.” Luckily and miraculously, the leak disappeared.
I now have to wait and see if my body is able to heal with proper sleep and nutrition. My numbers get better every week and I no longer look yellow. Nobody knows if my current liver will make it to next week, next year, or last 10 years. As long as they don’t tell me I’ll need a third transplant, I’ll keep hoping I won’t need one. I refuse to cry now over something that might happen in the future.
There's a danger in feeling physically invincible when your body cooperates, especially when you’re young. I didn’t realize how much the way the body works—or doesn’t work—impacted my life until it started acting up in a way I didn’t like. It has a bigger impact than people might think.
My friends drink and do drugs and it’s fine, but it’s harder for me now that I’m not doing as well. A girlfriend of mine lost consciousness after she overdosed on alcohol and cocaine—I don’t understand why you would do something like that to your body. I should probably just table the conversation, because comparing myself to others won't make me happier in the long run.
When someone asks me how I’m doing, I don’t allow myself to talk about my liver for more than 15 minutes. After that, it’s done. I don’t want to waste all of my free time on it. There are plenty of things going on in the world that are actually fun.
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