liver

THE MEDICATION GAME by Nora Logan

In January the New York Times published an article about a clinical trial initiated in 2017 by the University of Pittsburgh Medical Center. The study, which is also being conducted at King’s College Hospital, Massachusetts General Hospital, and Northwestern University, follows transplant patients with a living donor organ and then tapers the immunosuppressant medication down to one pill, with the aim to eventually reduce medication to nil.

When I read it, I was elated, but soon enough total jealously and dread set in. This will almost certainly never be an option for me. I’ve read and reread the article. I’m genuinely elated for those patients who will be able to live without immunosuppression drugs. And yet I’m still jealous. I’ve had such a struggle to accept the fact of my twice-daily doses of Tacrolimus and Mycophenalate Acid. Even with such delightful names, I’m still not there. I get the distinct sensation that the drugs are simultaneously saving my life each and every day and honestly, also ruining it. As the article states: “…the drugs are themselves hazardous, increasing the risks of infection, cancer, high cholesterol levels, accelerated heart disease, diabetes and kidney failure. Within five years of a liver transplant, 25 percent of patients on average have died. Within 10 years, 35 to 40 percent have died.”

Photo by  Celeste Sloman , 2017.

Photo by Celeste Sloman, 2017.

I’m young – much younger than your ‘average’ liver transplant patient that skew the statistics quoted in this article, but the truth is that I’m still a transplant recipient and those stats fucking suck. And I still experience side-effects and live with the possibility of complications that may one day arrive at my doorstep after years-long (hopefully decades-long) medication intake.

I’m resigned to the reality, despite fantasizing about the alternative. I have no interest in making a martyr of myself over the medication and its side-effects. Nor am I interested in returning to how I sometimes was at the beginning, the “I-constantly-read-every-side-effect-and-obsess-over-eventualities-like-it’s-my-job” approach. Daily medication that both saves my life and gives me the runs has taught me the very useful technique (in life, in work, in relationship) of being able to hold two feelings simultaneously. Sort of like when I meet a really hot guy in a loud restaurant who knows my friend’s cousin but the words coming out of his mouth make me want to rip my eyes out, though luckily I only catch every fifth word so I can just focus on his jawline and tousled hair rather than the content of his miserable chat. I don’t lose too much sleep over my side effects (except for the common side effect of insomnia, which is depressingly ironic). I had such a rocky recovery, with so many peaks and troughs that in 2017 my doctor told me point blank that I’d never be on mono-therapy. Since the liver is such a regenerative and resilient organ, many liver transplant recipients end up only taking one pill, usually Tacrolimus (Prograf). When he said, in his precise way, that this would no longer be an option for me, I broke down in floods of tears. As per our usual dynamic, he didn’t understand why I was crying (in his defence, I managed to cry at Every. Single. Appointment.)  

Looking back, I can now see his point (what’s the difference between one pill or two? Red versus blue?) I think it’s simply hard to accept that I have to take these drugs that keep me alive. Even if I don’t read them, the drugs do indeed come with such a heavily weighted list of perilous side-effects, and I can actually feel the harm they cause. And in my head (as well as in reality), the fewer pills I’m taking the better.

I’m much too much of a goodie-two-shoes to ever go off-piste or exercise any wilful negligence in modifying my medication intake without getting the green light from the team of doctors. I’ve read some harrowing stories about negligent patients who decide to take their medication into their own hands and as a result suffer awful consequences. I also have too much respect for my donor, my body, my doctors and my community to ever be so irresponsible (and I know what rejection feels like: it feels like death).

There is of course a small part of me that believes that I will one day be that patient who somehow achieves medication freedom (preceded, of course, by spiritual enlightenment). The doctors would exclaim “By George! She’s managed another miracle!” They’d look at the numbers on my multi-page blood tests and call me in for more labs. They’d proclaim, in total disbelief, “Well – this is unheard of, Nora – but these numbers prove that you’re the first patient in the history of transplant to completely and fully accept your liver into your body. You’re a medical miracle. Goodbye now. Please donate your body to science so we can study you at length and then name a wing after you.” I would shake my head, humbly decline having a wing named after me, and walk out of the clinic and into the smoggy sunset. My transplanted liver would just tick away in my body and my immune system would live with it in harmony and ne’er would the two combat again.

That is most likely never going to happen, if we’re being realists (which I hate having to be, another result of readjusting to life with a chronic condition). The meds can’t take away my daydreams—even if they rule my night-terrors! If we’re all talking on our video phones as the Jetsons predicted in the mid-1960s and only a step away from the hyperloop, I can still reasonably dream about zero medication needed to sustain my life.

At Northwestern, transplant doctors are asked everyday whether already transplanted patients are potential candidates for the study: “For now, the answer is that it is too late. These patients are not candidates for these new strategies to modify the immune system. But researchers hope that situation will change as they learn more.”  

So, back to what we already guessed was true: I’m stuck with my medication for a lifetime. Just like any relationship, it will take work and loving compromise (if only in my head) in order to exist harmoniously with one another. Although it does seem that only one of us is doing the heavy lifting here – hand to mouth, twice a day, with a lot of back-chat from the Other.  

Sometimes I wake up in the morning and I forget. I forget that this is who I am now. For a split-second, I’m just Nora, there’s nothing to do but wake up, have breakfast, take a shower, go to work. None of it happened. I’ve just continued on with my life and that liver scare was just that – a scare. It was all just a dream, wasn’t it? And then I remember again. And I make my breakfast, and I have my shower, and I take my panoply of life-saving medication because that is who I am now. And I’d like to be here for it again tomorrow. 

COMPULSIVE FACETIME FOR CONSULTS by Nora Logan

When I was seven years old, my parents moved from New York to Hong Kong for my dad’s job, and we set off on an adventure that would change the course of this little Queens Chick’s life. Two years later, we moved to London. At the end of the school year, my teacher had me point to where my family was moving to on a world map and all the kids in my class “oohed” and “aahed”. My seven-year-old brain could barely fathom that a plane could travel that far, much less that there was life beyond New York. The farthest I had travelled by that time in my short life was to Boca Raton in Florida to visit my grandpa. It was the start of a grand adventure, of living all over the world, gathering people up as I went. As I got older, I would get the two year itch — to move on, to keep exploring, to discover new experiences and people. I ended up going to seven different schools and lived in six different countries by the age of 18. I was what they might call a precocious motherfucker. Even though I was always aware of my privilege, and knew it was really just good fortune to have had the opportunity to grow up in such a global way, I still took it for granted in many ways. I thought it would always be accessible. I wouldn't change my experience: I’m inordinately lucky to have lived in other countries at such a young age and see the world in an outward facing way, and to be comfortable living in other countries and cultures. But it can make you feel adrift and like you have no real home. That’s where the friends come in.

Most international school kids will tell you the same thing: once you find the group of friends in which you feel at home — you stick to them like glue, since the rest of your life experience has been so transient. The proverbial glue can mean lots of long-distance relationships over WhatsApp groups, FaceTime, Skype and thank-god-for-the-internet messaging. When you repeatedly show up as the new kid in school and then fall in love with the people around you, only to be forced to move on, you hold on to the good ones.  And try to create some semblance of community wherever you go. I used to sob for hours on end the night before going to a new school. I’d feel particularly different and weird for a while and then slip right into the fold (ah, the resiliency of children). I never felt like I fit in, anywhere, because I was not always only the new kid but also foreign. I am foreign wherever I go, which I’ve come to see as a great gift. I fit in with a group of freaks who understand that experience and have a similar conundrum of not actually having a straight answer to the question: “Where are you from?”. I’ve luckily found them, and because of that — many of them live in other cities, countries, continents. If you ask me where I'm from I will have to ask you how long you have and to please never ask me where I'm from. 

So when I got sick, and was dragging my feet on taking my sorry ass to the hospital, I’d call and text consistently with my multiple long-distance relationships (and also with those who did live near me and also with anyone who would listen, the guy at the bodega on the corner, the cleaning lady at work—the world needed to know and I was getting those phone numbers). Two of my good friends, Jenny and Mike, had just started dating and I acted as confidante to them both. It was basically me just telling them both to man up and fall in love (which they have, successfully — well done guys). My matchmaking services are available for a price as long as you keep a guest room for me wherever you happen to end up and feed me and maybe pay me a stipend. 

When I’d consult Mike about my symptoms (who is definitely not a doctor although I treated him like one during those early days), it would mostly go like this: 

“Mori, I don't know what to do, what should I do?” 

“Nora, you should seek medical help immediately.” 

Then I’d laugh it off and change the subject. I’d keep him up-to-date on the deepening yellow of my eyeballs or how many public bathrooms around NYC I managed to vomit in that day. Through out my subsequent recovery he maintained that healing crystals would not and could not save me. He may have been right, but it didn’t stop me from taking them with me wherever I went for protection. I no longer carry a heavy sack of crystals with me wherever I go, but I do carry one in my pocket and spread them all round my house. Jenny allowed me the space to sob down the phone to her later on, as did many, many-a-loved one —in person or virtually. I certainly upstaged their new relationship with my liver failure, but thankfully they didn’t hold it against me.

At the time we were also planning a trip to Central America for which we had a Whatsapp group called “7 wonders of world tour” (terrible name probably created by my friend Faris). The group provided endless jokes — including the below photo to indicate what I would most likely be doing on the trip. It wasn't too far off from what I would, in fact, be doing in the coming months.

I would send them (and the cleaning lady) photos of my yellowing skin and pock-marked face. I’d get separate messages back “You don’t look so good,” and “What’s going on?!”, and “What do the doctors say?!”.  No one quite knew how to respond and it was difficult to really convey what was happening over text message. Technology does have its limits when attempting to accurately convey a total breakdown of one of your vital organs. Hell, it was hard enough to see in person. Still others would provide comic relief in moments when I didn’t know how to react to the whole horrid thing. 

As time has gone on — it’s now been three years since first getting sick, and two years since my liver rejection — I don’t speak to everyone as much and I no longer ask for consults because I have a team of professionals to do that. Some of that is circumstance: lives get busier, kids are born, moves are made, time feels in shorter supply. But the idea of knowing my people are just down the other end of the phone is enough to get by on. There were times in my illness and recovery I could no longer speak to anyone, because I had nothing to say — and things felt so, so bleak. I’ve since dug myself out of that hole (with considerable help from family, friends, mental health professionals, my social worker, and spiritual teachers). It helps that I am now able to live more and be out in the world — which means I have more to talk about than I did for a long time. Sometimes it’s still hard to pick up the phone, but I push myself to connect when I’m able, because I know it’s how to participate in my community. My world is no longer limited to the merry-go-round of doctors appointments, medication and setbacks. It doesn’t feel so tiny anymore, and I don’t live in the confines my bedroom, shuffling from my room to the kitchen to the bathroom and back again. Although my reality does include the medical appointments, the medication and its accompanying side effects plus the prospect of an occasional setback — the limitations of my experience are less confined. I’m grateful for all the Facetiming I did in my darkest days, and for the many times I didn’t pick up because I just couldn’t face it and for my friends who still stuck with me—and kept trying. And for the knowledge that you can come back to yourself — changed, bruised but still breathing, and maybe for the better.