acute liver rejection


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. 


I don't really know where to start, I've jumped around so much. Let's get to what shall henceforth be known as The False Start hospitalization, in which I was basically in complete denial for the entire time I was there (sound familiar?) This first stint was after my visit to the ER, they had me come in for bloodwork on the Monday morning, I went with Tara, who was in town to visit me and we were just baffled. I attempted to go to work that week but by Thursday they had taken my blood again, and requested I come in for an MRI. So I go into work on Thursday morning, after bloodwork, and get called back in to do the MRI for about 12pm. So I go straight back to the clinic and do the MRI and by this time, I get a message to please come back upstairs to the 4th floor because they had to speak to me. That was not a good sign.

The mind is a funny place to live, especially when you are unwell. I knew something was not right, I was fully aware that this is NOT how I am supposed to feel. And they don't just call you in for an emergency MRI if things look great and everything is going swimmingly. But my mind was just telling me to suck it up and the idea of being admitted to hospital was honestly beyond comprehension. I'm sure the thoughts crept in, but I really was sure it would pass and I'd be absolutely fine after the weekend. 

I was told: we want to admit you right now, we have a bed for you and we've spoken to admitting and you should go over there right away. I was numb. Or in denial. Or shut down. Or something. I cried, but not the long sobbing moans I had from my previous hospitalization, this time, I wasn't taking it seriously, I thought I'd be in and out -- in fact, I was determined to be in and out, boom bang boom, fix me up and send me packing. Oh, how little I knew then, how young I was. I literally was thinking, umm...I have a meeting at 4pm, it's super important, and I am not going to miss it: any way we could reschedule this whole being-admitted-to-hospital thing? That'd be great, thxxxxx.

Sidenote: before you are a patient in hospital (aka someone who has essentially been very healthy their entire lives), or at least one who stays for a while, you never think about certain things. But the idea of 'we have a bed for you' is like liquid gold to one's ears when you know you don't know how long you're staying. And if it's on the floor where your personal doctors treat people, even better. And if it's a single room (meaning you don't have to share) EVEN. BETTER. It feels like winning the jackpot to know you won't have to be thrown on to some random floor, or share with someone who is very sweet but watches TV the entire day on their iPad and doesn't seem to be in possession of any headphones in the entire Northeast and really likes loud TV shows with explosions and also reality TV with catfights (true story). 

So my main man Dan who is a nurse on the floor of the transplant floor and awesome and loves to chat (shoutout to 2 North, love you like a sister), had sorted me out with a room. I called my parents. They, too, were in disbelief. I told all the necessary parties I had to tell. Truly, nobody could really believe it. I swear: I was on quaaludes or had been given a temporary lobotomy, because although I wanted to tear my hair out and scream running in the other direction, I strolled into admitting and then up to the floor, cool as a cucumber. Not kicking and screaming like I had the second time I was admitted in September or the time I would be again, not nine days later. I think I thought, they're just getting the numbers under control and I'll be back at it in no time. My dad came from work and my mother followed, with all my accoutrements that I need from home to keep me sane (and because I absolutely loathe the hospital gown, mostly because I flash everyone constantly, can't seem to get my head round it). 

Like I always say, denial is a forceful mistress. Well that's the first time I've said that. But it's true. More to come on How They Love to Keep You Up All Night in hospital, and not in the partying way. And 8 Days in Hospital and What It Does to a Woman When She's Thrown Back In. Thrilling summer reading coming in fast and furious!