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. 

HAVE TRANSPLANT, WILL TRAVEL by Nora Logan

When I was given the go-ahead to travel after my transplant, I was terrified. Buses, subways, and shared vehicles to get around town were nerve-wracking enough: I always wore a face mask, sometimes I wore gloves, and I never left home without a full complement of anti-bacterial spray, wipes, and hand sanitiser. I had been notified early on by the doctors that it was dangerous to board a plane and that I’d basically have to wear a hazmat suit if I did decide to do so. The first trip I made was to Miami, only six months after transplant. It was ambitious, but I felt at the time I had to do it.

I booked the ticket, but only after weeks of U.N.-worthy negotiations in my head and with my friends. And by ‘negotiations’, I mean flat-out freaking out. Family, friends, and the occasional stranger and I tensely pawed through the pros and cons: the risks involved, what might happen if I got sick in Florida, what the consequences would be if things went south, how I would manage the sleeping arrangements, what I would be able to eat—and so on. And the pros: the prospect of warm sand underneath my feet as I stood at the ocean’s edge, time with friends in a social setting—something I had very little of in those first months, and respite from January in New York City. 

Even in my imagination I was, at this point, too scared to consider dipping my bare toe in the ocean for fear of bacteria entering my system. My imagination, however, was also able to picture myself far outside of the four walls that seemed to be shrinking in on me during the many months I was stuck there, feeling lonely, sick and depressed. The four walls that defined my world were oppressive and safe, holding me tenderly and choking the life out of me. Three-and-a-half years later, the room is gone; my parents moved three floors down to a smaller apartment, with no lingering vibrations or memories to shoot out of nowhere and shock me into that grim state of dependence and dis-ease. Three-and-a-half years later, I can picture that room and feel gratitude and a general “Fuck You” attitude in equal parts.

At that time, I had only really been in the cocoon of the apartment, and I barely ventured out into the grime-filled city. I was still too afraid to eat in restaurants (bacteria), or even go to the park (rats). I certainly didn’t dare enter the subway (nor had I yet been permitted to by the doctors). I had acute symptoms of PTSD and I was not prepared for the big bad world. I was no longer the fearless girl let loose in India at 18, the supposedly well-seasoned traveler who got accidentally kidnapped and lived to tell the tale. Here was someone new: nerdy and delicate, who for months regarded a trip to Brooklyn as impossibly exotic, a faraway dream.

The apartment also oppressed my parents; my mother spent as much time in it as I did, often on her feet and making grilled cheese sandwiches I usually had to put down after a bite, making runs to the laundry, and changing the sweaty sheets. My father made me breakfast each morning which more often than not went barely eaten, and took regular trips down to a butcher on 9th Street to pick up bone broth and organic meat to make stews with: since I had to eat a certain amount of protein a day, I could no longer be a vegetarian. Everyone was tired. I was getting better, and I became aware of life beyond my self-contained world. Sometimes it’s easier to do the things we fear out of altruism, and to be able to give my parents a much-deserved rest after months of intensive care-giving appealed to me enough to start turning the tide. I also knew that if I didn’t venture out, our collective heads were likely to explode. In the end, my desire to do something to help ease the frazzled nerves of our family won out over fear, (added to that the ripe seduction of freedom - at long last, freedom!).

Yet the girl who, since the age of seven had filled two passports— American and British—with stamps and visas from four continents, must have been in there, somewhere. That girl left the dreary worrywart at the gate and boarded a plane heading out of subzero temperatures in New York City to land in warm and sunny Miami. I booked in a safe-sounding 6 days, so I could get back in time for blood work the following week and back to my sterile bedroom for safety. When my transplant PA gave me the green light to go, her only words of advice were “Don’t use the airplane toilet.” I couldn’t believe she let me go. I half-expected her to put the kibosh on it immediately when I asked (and half-hoped, since my fear needed something to feed on). But the angel let me go.

This first trip was rocky. There were tears in transit; there were tears pretty much daily. If you told me tears were healing waters that bathed my new liver, I’d tell you I was over-medicating. But there was lots of laughter, too, the famous ‘best medicine’, more powerful than tears, with highly preferable side effects. I had to laugh at my first plane trip. I was slung into a wheelchair and used the airport assistance in New York and on landing in Miami—which was an entirely new paradigm for me. I wore a mask and doused myself with hand sanitiser so often that I may as well have showered in the stuff. I used half a box of antibacterial wipes trying to scrub away germ-infested surfaces, which included every part of my seat. I imagined an invisible jelly of strangers’ dead skin cells, splattered, dried vomit, carelessly changed babies, the drool of passed-out drunkards. I didn’t even look at the toilet, much less go anywhere near it. When I was in-flight, I wrapped my scarf around my head so no germs could enter, or germ-infested people could come anywhere near my personal space (it was January after all). Anytime someone coughed, I flinched. I’d like to say that’s the only time I travelled in that way, but those rituals continued for a couple of years. That was the only trip I would make in that first year of transplant, because of a rejection episode that came in April. But it was a triumph. It spelled an idea of actual life being a possibility after transplant. I hadn’t been so sure.

The next trip wouldn’t be until the beginning of 2017, when I went to LA and was equally as terrified, but with a bigger bag and more trauma under my belt. I cried at least five times, coming and going. I broke down even before the plane took off because, weakened by two years of undernourishment and over-medication, I couldn’t lift my hand luggage high enough to go into the overhead bins and the flight attendant—bizarrely—refused to help me. It was a low moment and one in which I wished the devastation inside my body was visible, so I didn’t have to explain.

I later sent a strongly worded letter to the airline, which was far too verbose and a wee bit overwrought—but I saw clearly that the people on the flight who were supposed to help wouldn’t help me because I didn’t look like your standard “disabled” person. Even worse, I could practically see speech bubbles over their heads calling me spoiled, over-privileged or lazy. In response, they said they were taking the matter seriously and gave me $100 for my trouble, which made me feel a little cheap (and yes, of course I took it). I booked five flights with it. Ya, right.

I’ve often experienced this perceived ableism. People, strangers, to whom you appeal for help with heavy baggage, a place to sit down because of a dizzy spell or…fill in the blank…can be obtuse and unhelpful. There are various levels, from a look of subtle disbelief, to eye-rolling, resentful assistance. But the worst is when someone just dismisses my stated needs, which happened with more regularity as I recovered and now looked so good. I have tried to be stoic and ignore my own needs before asking for help. This is not advisable, but I’ve found it inevitable that even when I clearly state my medical history and explain real dangers to my immune system in a situation that poses no threat to anyone else, my careful explanation is not always met with compassion or even understanding. Sometimes it’s actually easier to navigate by practicing stoicism, rather than complain. And of course, sometimes you meet someone who gets it, and helps.

After the success and joy of venturing for the first time outside of my four walls, I’ve gone full throttle into travelling. I take precautions and take care of my transplant, and luckily, I’ve always been ok (touch wood). The very tired, very frightened person who couldn’t imagine putting even one little toe into the Atlantic Ocean in Miami has been slowly re-growing fins. I cautiously began to swim back to myself, starting with speedboats, canoes, even a sailboat; I went on to floating on a raft in a clean Canadian lake, I let white water whoosh over my feet in a Vermont creek, I dove into a certified-sanitary swimming pool.

On the two-year anniversary of my transplant, I stood with my feet in the sand looking out at the Cantabrian Sea—next to the Atlantic Ocean once more. I took a few ginger steps into the salty and warm August water, salty tears pouring out of my eyes. I cried not only because I finally found the courage (and opportunity) to swim in the sea but also because I couldn’t believe my growth—that I had emotionally overcome the fear that was so present for so long. And I could not have got there without self-work, therapy, and a commitment to reminding myself that I was transplanted to live, not to hide. And though I often do let fear take over—I still flinch if I’m sat near someone who displays even a slight sniffle (but I no longer make faces, which was always a bit rude), it’s not the first thing I reach for.

My doctor told me that the surgical masks don’t actually work very well against microbes in a plane, and that I only really had to wear one if it made me feel better. So I always travel with a supply of masks; I put one on if I feel I need to, but I’ve relaxed about that, too. I still douse myself in hand sanitiser and make sure I wipe down my arm rests and the back of the seat in front of me. I realised last year that, unconsciously or not, I trained myself to never touch my hands to my face in transit. I finally started using the toilet after my bladder was about to burst after a short trip to Canada last year, and now I just make sure to hose myself down on arrival. The shower is my first port of call. I think we should all take up this practice, considering how disgusting airplanes are. I don’t use a wheelchair anymore, but if I’m forced to stand for a long time, sometimes I rethink my decision. Standing for long periods of time result in dizziness and fatigue, and any unwanted attention I get sitting in a wheelchair beats the spectacle of me in a heap on the airport floor.

Ah, fatigue — that pesky foe. Travelling fatigues me completely, in a way it never did before, when a latte or a melatonin was all I needed to reset myself after a 15 hour flight (after which I could easily go out dancing for a further 15). Granted, I was younger then, and most people past their 20s are fatigued by travel. Since the transplant, it takes me a little longer to bounce back from jet-lag; the big difference is that now my body is overcome with an ache that seems to permeate every cell in my body. Knowing that this is my usual reaction, I make sure I am mindful and try not to push myself too hard—although it can be tough to resist going from baggage claim to a party. Last year, I took a chance on a trip to Colombia, and nothing bad happened (except for having all my credit card details stolen, which is less transplant-related and more idiot-related). There wasn’t a shred of ambivalence: I loved every single second. In 2015, I couldn’t have imagined taking such a trip; even in 2017 I probably would not have believed you if you told me it was a possibility.

We all have something that defined us pre-trauma, illness, or accident, and our greatest fear or challenge is that we might not be able to be/do that again. Growing up the way I did, travelling, speaking other languages, learning other cultures, meeting new people felt like some essential part of who I am. The fear of losing that great privilege was huge, but it was just one possible change among so many actual and potential upheavals. It’s not at all lost on me that my privilege is two-pronged: not only am I able-bodied enough to travel now, I also have the means to do it. Even though I’ve had to take certain precautions in the way I carry myself: from the street, to the airport terminal, to the bathroom, to the aircraft—it’s made me more mindful in general, and the small tweaks to my travel routine (what some might call quirks) are a small price to pay to be able to continue to experience the world. The big welcoming world that I’d almost lost.