transplant stories

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.

TELL THE TRUTH + TRY NOT TO SMOKE by Nora Logan

On the very last day as a civilian before my first hospitalization in July 2015, I remember getting a banana from a fruit stand on the corner of East 15th Street and Park Avenue South and smoking half a cigarette. I was with my mother. We hailed a cab. We called my dad to tell him where we were going. We got to the ER on the Upper East Side. That would be my last cigarette ever. I spent the majority of my misspent youth in London, where cigarettes were widely available, and during my adolescence and early 20s we all smoked. We smoked at break time, at lunch, next to school, after school, on the way home, waiting for the bus, in cafes, at restaurants, in clubs. You could smoke everywhere, and we did. It was a different world (a smellier world). Cigarettes were cheap as chips. I loved smoking. I had a deep love affair with it. I am really much happier now that I no longer smoke. Things are much less complicated when you don't have to constantly interrupt your day to have a cigarette. But it doesn't change anything about how I remember it. I love how it made me feel, I loved the act of having a coffee and a cigarette or a glass of wine and a cigarette, I loved having a chat with a friend over a cigarette, I loved having that oral fixation, I loved having a secret. I can't believe I thought I was tricking anyone into thinking I didn't smoke when I was a teenager. A friendly word of warning to anyone who thinks they don't smell like smoke YOU FUCKING DO AND EVERYONE KNOWS IT AND YOU'RE NOT AS CLEVER AS YOU THINK, 15 YEAR OLD NORA. We all know all the many reasons why one shouldn't smoke, and in a twisted way, I'm grateful for having an emergency liver transplant because it was a great and ultimately very effective way to get me to finally quit. For anyone out there looking to quit, may I politely suggest not using my tried and true technique and just buying patches or that Allen Carr book everyone loves so much. I can tell you now that it's a lot easier, less fraught and decidedly less time consuming than a liver transplant. I like that I know exactly where and when I smoked my very last one, it was a nice little bookend to a years long torrid affair.

I think when I first started writing this blog I downplayed this aspect of myself -- I felt the need to be infallible and perfect once I was given the gift of a new liver. Somewhere in the deep dark depths of my own mind, I'm sure I thought they'd take it away if I was too honest (despite always striving to be as honest as I'd let myself be, in the moment). I'm not sure who they are or how they would go about extracting a liver from me, but I was indebted to 'them' and so it felt important to be the ever obedient patient. As if I'd get a medal at the end of it, or something. Newsflash: there are no commendations in hospital, there are no awards for 'most obedient patient'. The award for 'perfect patient' does not go to anyone, ever. You don't even get an award for 'did her best not to fuck up'. The main objective for doctors, your family, the hospital, society at large (if you're lucky)--is getting you to a point where you're basically alive and they can politely kick you out is best case. 

I've made a bunch of mistakes pre-LT and post-LT and future-LT-me will make some, too. We all make so many mistakes that sometimes it feels like the only thing you're doing is messing shit up. I smoked for basically 15 years straight, and I never once tried to quit. I can't even be one of those people who say 'I mean, I smoked on and off for 15 years' or 'You know, I quit for about 8 months' or 'I tried this really great hypnotist--she's amazing--you really must go to her, she cured everything I've ever done and now when I have a pee it is flaked with actual gold.'  I'm really not ashamed of having smoked for so long. I mean, of course, I sometimes regret all that money that went down the drain or the time-wasting or the standing in the freezing cold getting frost-bite. But I don’t feel the need to qualify saying that I smoked with anything like 'Oh, how I wish I hadn’t.' or 'God, how could I be so stupid.' I loved smoking. I loved that part of me. I didn't think it was gross at the time (which I have come to realize it is); I thought it was sexy (only if Kate Moss is doing it); I thought it was fun (it’s really, really fun). 

I don't admonish anyone else for smoking, because that would be beyond hypocritical. My friends can tell you how much. I can't really be around smoke anymore because it makes me feel sick and gives me a headache (although if I am conveniently placed in a wind tunnel which does happen more often than one would think I've been known to ask friends of mine to smoke near me -- cheap thrills where you can get them). Also, if I’m around smoke, I’ve been told, it can increase the chances of me getting a cold because of my suppressed immune system. So I'm really 'supposed' to ask people to slowly step away from me if they're smoking. 

The point is that we are only human, and whatever blows your skirt up blows your skirt up: everyone has their vices. To ask that I suddenly shut off that part of me because I've been told I can never smoke again would be dishonest. It's the same as expecting that sick people never have sex, or that they don't have a desire to have sex, purely because they are sick. A calamity happened to show up in my life and turn it all upside down and gave it a nice little shake. That doesn't mean I didn't engage in a bunch of crazy adolescent proclivities before the calamity appeared. Just because we are patients or we have a medical condition of some sort does not make us inhuman or devoid of basic human impulse. It does not mean I do not long for the sweet smell of tobacco on a summer night. It does not mean we do not remember when life was just a languid afternoon down the pub, with not a teenage care in the world. There would be nothing more joyful than throwing caution to the wind and doing something entirely spontaneous. It’s so beyond boring to build your life around when you have to take your medication, or when your next doctor’s appointment is. And even if you are not a patient, the same things might ring true: building your life around your kid's schedule, or your job's schedule, or your bills' schedule -- or whatever boring schedule life demands of you. The way I get my kicks now is meditation. I actually can't even believe that that's what I think is the most fun thing to do. But all those selves that came before me, I see them. I am so different now. I see the other selves of mine. I still like those previous incarnations of myself. I won't apologize for them, ever. 

Sometimes, I have been very reactionary and defensive when the doctors ask me leading questions about whether I have smoked. As if they are waiting for me to trip up, to make a wrong move or do something irresponsible. Which, by the way I might, at some point. I'm only human. At the beginning of all this, I would get defensive when they asked me if I had smoked. They'd say: 'Any smoking?' And I'd look at them, speechless. Then irritated. I'd curtly reply: 'Nope.' How could they possibly think that I would do that when I was so ill? How could they possibly think I'd be that disrespectful? But 'they' are not waiting for me to make a wrong move, what could possibly be the upside of that? I suppose they have to ask, in order to help. I’m not sure why they ask. I would love nothing more than to do something completely irresponsible. But illness and aging, they teach you it’s not worth it. And by the way, life is long, and people change. I cannot say that I won't feel differently in 10 years time. That I won't do something like smoke a cigarette. I don't want to, I don't have any desire to and I have committed to strive to never smoke again. But again, I use this as an example to remind ourselves that we are only human and as people and patients we are asked to do a hell of lot to just get through the day. Which is tiring and very dull, let's be real. The blame game is one we'll never win and the enormous pressure of being responsible for oneself in life can sometimes be overwhelming. It helps to tell the truth and try not to smoke.