NYC

THEY THOUGHT IT WAS HEP E AND MADE ME LEAVE THE BUILDING by Nora Logan

I WENT INTO work after urine and blood testing on Tuesday morning and it was pretty brutal. Things were, unsurprisingly, not going well. I should have, as I've said before, just packed up right then and paid $100 to take a pedicab to the hospital or just found the first police officer with a horse and got him to let me bareback up 5th Avenue. But I wanted to wait a cool 7 more days before I really and truly got the message and, after an awful ultrasound at Beth Israel, checked with my insurance about which NYC hospitals were in network and took a cab up to New York Presbyterian (even then, it was my mother who threw her hands up and said: enough is enough already). So I'm sitting at work and my liver is just casually failing and I feel so unbelievably shit and by this point I'm getting sort of scared but not thinking your liver is really on it's last legs you need immediate medical attention because I didn't know and I also didn't have direct contact with my liver like I do with my new one. Nothing like a transplant to get you really in touch with your body. And also, we hadn't got the test results back yet. And because the actual last thing from my mind was my liver failing and the only thing more preposterous than having my liver fail was the idea of having a transplant. I mean, I didn't even know what a transplant was. I still am not quite sure what it is. No, ok I admit, I knew then and I know now, but like a lot of you who might be reading this blog and going, I just don't really understand and it's so out of the realm of possibility and I can't even conceptualize and oh that's the sort of thing that happens to other people and it seems so sci-fiey and I'm just not educated on it. I didn't know anyone my age at the time who had ever had any sort of transplant. The closest I was to it was my friend's mother, who has had a couple of kidney transplants and is one of the strongest people I've ever met, but like the twenty-something I was, I never paid it too much attention. It was also far from my mind because I was TWENTY EIGHT YEARS OLD AND WHY WOULD I EXPECT TO BE DYING? Have you noticed that in your twenties you do all manner of terrible things and make awful decisions because you really have no concept of dying or death? I guess it's a pretty common theme through out history and all of art and literature so I'm not breaking ground here. I used to drive a motorbike in Indonesia everyday for 2 years with my headphones in on full blast weaving in and out of traffic as if I was Evil Knievel. I don't even have a real driver's license. That doesn't even scratch the surface of idiotic things I did in my 20s.

Photo courtesy of We Heart It

I have since found out that there are a great number of young people who have to have all sorts of transplants, and a lot of them are children. Although the average age of a liver transplant patient veers more on the side of 60+, it's really not uncommon to see young people having to have these operations. What surprised me even more, is that 1 in 5 people who go into liver failure never find out the cause. There's such a stigma that surrounds liver transplant in particular in society at large, that it's just old alcoholics and drug addicts. I've experienced this stigma first hand, which I'll talk about later. It's a complete fallacy. Yes, of course there are alcoholics and drugs addicts who have to have liver transplants, and they are also completely deserving of them. Liver disease  often stems from another disease: addiction. But there is a whole host of other people, too, who never know why but their body just fails them. 

Warner Bros. via    gif-database.tumblr.com

Warner Bros. via gif-database.tumblr.com

My friend Alex suggests I go try to take a nap somewhere. Which is just not really done, at least at my job, and I would assume all of your jobs unless you work at Blockbuster in the 90s. I don't think anyone has successfully napped at work since 1996. First I go to my friend Zarah's office which is otherwise known as a broom-closet. It's great for hiding because people don't know where it is and she can't really be found. At the time, anyway. She has now graduated from broom-closet office to office-office. I've since returned to work but I still can't find her. So I'm lying on the floor in her tiny office contemplating my fate and Zarah is doing work and wondering what the hell I'm doing and giving me a look like 'Fuck man, you look like shit.' Fair dues, I did. She was polite enough to not say those words though. She talks a lot with her eyes. She kindly let me use her space for a good 15 minutes and then I staggered back to my desk. This was unsustainable: the fatigue was so bad I went back to my desk, then to the toilet, then did a lap around the office and then, feeling skittish, back to Zarah's office.

Oh, I'll just be over here quietly avoiding my liver failure. Photo courtesy of observando.net

Then I remembered there is a sweet nap room upstairs at the nurse's office. So I walk in and tell them 'I'm just so tired and feeling unwell, do you have somewhere I can take a nap?' At first, they let me use the room, you just go and sit in a comfortable chair and breathe deep breaths and attempt not vomiting. Oh wait that was just me in that moment. If anyone else were to use it they would just find a calm and peaceful environment. It was somehow connected to the office by a sliding door and I could hear them start to discuss my 'case', much to my dismay. I essentially blagged my way into this nap room unnoticed and the nurse on duty (she was smart and experienced) wanted to know why I was here and why I needed a nap. So she grills me, gets me up out my nap chair where I was having a great time not vomiting. 'What's going on? You were where? Bali? What? Why are your eyes yellow?' So I told her the story, 'I'm under the care of a doctor who thinks it could be Hepatitis E,' (minor lie, she wasn't a doctor), 'but I have tested negative for A, B and C. And yes, I was in Indonesia'. This is where she switched on me. 'You can't be in the building if you have a potentially infectious disease, you're just not allowed on the premises, if you stay any longer we are going to have to contact disease control.' Um, excuse me? No no no. You don't understand, I just had two weeks off and then I got stuck because of a volcano situation which is just like me to get stuck in a volcano cloud and I missed another day and a half of work and it just doesn't work like that and no I am not leaving the building. What actually came out was a swift nod (she was very scary and authoritative, to which I generally respond) and 'Ah ok, well can I go downstairs and tell my boss and get my things together? Do I have to leave right this minute?' She let me stay to tell people I was barred from the building and gather my things. 

It was then that I decided to call the Nurse Practitioner I mentioned in my previous post. I had already been trying to get her on the phone because this was all getting a little too real and I wanted my test results immediately. It was extremely difficult to get her on the phone, she had patients back to back and she was running around. When I finally do get through to her, it's that same old asleep at the wheel attitude - if I didn't know she was pregnant I honestly could have sworn she was chaining joints. 'Hi, I really don't feel any better, I'm still vomiting all the time and I just took a nap at the nurse's office at my work which is really not normal for me. Do you think I should go to the ER?' 'Well you can go in if you want to but honestly I think it's Hepatitis E and we should just wait for those test results to come back.' I swear this is the medical advice I was given. It's jaw-dropping looking back. 

Would have loved a little direction like Patsy would give. 

I know you could be reading this and going ... well you know, the girl was in liver failure, after all, maybe she has a foggy view of things. Oh, I was for sure foggy. But I remember how this all went down. It was life and death, after all. And I have NEVER got to say that before and meant it. So you better believe I'm going to commit everything to memory. Also, as proof, here is a direct quote from an email exchange the very next day with this woman on the 22nd of July (5 days before going into hospital), and the first time I found out my liver enzymes were abnormal:

'I am assuming that this is hepatitis E  - you could come back here for the test during lab hours which are 8am-11am or 12pm - 3pm  - I will order it. I don't know that going to the hospital will speed anything up, but they would be able to give you some IV fluids and some IV anti-nausea medicine, so it depends how you feel.'

IT DEPENDS ON HOW I FEEL?!?!?!?!? DID SHE NOT SEE ALL THE ABNORMAL TEST RESULTS?!!? I was in a fragile state, and for that very reason that I was a bit foggy and out of sorts, I needed my medical professional to tell me to go to the fucking hospital. Not 'feel it out myself'. She was, what can only be described, as trippin.

HELP ME HELP ME HELP ME HELP ME HELP ME. Photo courtest of Whimsy Dreams

I do the long walk from the elevators back to the office and steel myself to prepare to tell them I'm leaving the building and why. I relay the news to my boss and I somehow still feel guilty despite it being completely beyond my control. My problem was that I was under some delusion that any of us have any control over anything at any given time. She's very kind and she says well you absolutely have to go, maybe next time don't go to Bali though, just an idea. So I jump into the G train and go back to Brooklyn. My feet are like weights. I'm on a chain gang and the chain gang is my body because my body isn't working. That night, another beefa, Layla, comes over to take care of me. Layla is a good girl: she's a mother hen, a protector and was another one of my dragons throughout this experience and has been there with me all along the bumpy road. She came over to cook dinner for me because she wanted to help and I think it's more than likely I probably requested her cooking services. She had been away for a few weeks and we wanted a catch up and she offered to come round with food.

Layla that beaut when she first came to see me at Club Cornell, as I affectionately call it. 

Her mother is a doctor and another very wise woman (apple doesn't fall far from the tree) and part of me thinks, looking back, that the daughter of a doctor in Layla wanted to come have a gander at me, give me a once over for herself after hearing my symptoms. And probably see her mate too. So she comes round my house, we hang out and she catches me up on the last few weeks and we have an early night. It's a pretty nice evening, everything considered. It's high summer and there are obviously lots of stories to tell. We hang out with my roommate Keenan, who is seeing me through this whole thing and living it with me, day-to-day, and none of us can really understand what's happening. So we choose to, for the most part, ignore it and carry on as normal. This is only Tuesday night. At this point, and I can't stress this enough, I didn't even know my liver enzymes were up. I probably had a couple of glasses of wine. Ignorance is bliss. 

HYPOCHONDRIA by Nora Logan

SOMETIMES THE BUMPS in the road in my recovery feel like they are never ever going to end, and maybe they won't. The 'road bumps' though, are just part of life, really. Life really sucks for everyone sometimes. And everything is relative. The road bumps will certainly get more insignificant though, and they already are. A lot of people open up to me about their own health struggles, most likely because of my own struggles and how open I've been about it, and they more often than not qualify it with 'Well, it's nothing in comparison to what you've been through'. That might be so on the face of it but I received a great piece of advice from a friend's mother many years ago and it stuck with me: Everyone's problems are relative, and no one person's struggles are more important than the next, it's just a different path. I am extremely lucky that I am even in the United States. My friend Tara told me about a friend of hers who is from Afghanistan. When I was in recovery from my liver transplant, she told him the story, with wide eyes, expecting the sort of reaction she had become accustomed to (shock and horror). He said, nonplussed, 'Oh yes, my friend died of that.' It happens all the time there and around the world, where often transplant isn't even an option. So it's relative, and I know I'm fortunate. And as Westerners we take advanced medicine for granted. And yeah, what I've been through is pretty terrible, but it's my journey and I wouldn't change it (mostly because I can't but also because I feel like something positive has to be coming around the bend). 

Artwork courtesy of Peter Tunney

Saying that, there are myriad things that I now have to come to terms with on a daily basis that I just can't always abide. And my patience is wearing brutally thin. This past week I've had a cold and wasn't allowed to travel due to a condition called 'severe neutropenia' which means your white blood cell count is low and you're more prone to infection than normal. Which means no flying. Ok, that's fine. I can move the goalposts and be disappointed about it and move on about that frivolous luxury (after a solid 4 or 5 days of complaining and extreme denial). 'Maybe I can just book this $1500 flight to California for tomorrow and not tell the doctors, what do you think?' I said to Tara only 5 days ago as I furiously searched Skyscanner for deals, knowing full well that it was a fantasy. Those emotions I can move through and feel the feelings and say the crazy things and carry on. 

This is in California. Why wouldn't I try to go here. Photo courtesy of Where Cool Things Happen

But when I'm still being faced with conditions like a low WBC, for the third time, for which I have to inject myself with Neupogen (or politely ask my mother to do it if I'm feeling squeamish, which is most of the time), it's the little things that really set me off. I've had this cold for two weeks and although I was lazy at first about the tonics I usually make myself to kick something like this, it keeps persisting despite drinking cup upon cup of my personal cold remedy and I'm starting to go mad. Not really because of the cold, but because I have an ear issue, that I've had ever since transplant, and it gets about three thousand times worse when I have a cold. It's mostly annoying because I can hear myself talk, which is basically the most brutal thing ever. You know when you hear yourself on a recording and it makes you cringe? That's what's happening in my ear right now, 24/7. I can also hear myself breathe, as if I was in the International Space Station or Darth Vader. When I chew, there's the sound of the food being chewed basically IN MY EAR. I've had it checked by multiple Ear, Nose and Throat Specialists and they can't see anything and don't believe me (ok, the not believing me might be me projecting). But god give me strength, as my grandmother used to say, because I'm not making this up: it feels like there is a hole developing in my ear. Like my ear is just melting into my mouth or something. One doctor suggested it might be a collapsed eardrum but I have no idea what that means and no doctors (ENT or otherwise) seem to know what to make of it nor are they interested in exploring it further.

Then, last night, I was going to sleep and I felt under my arm and there was this strange bump. I am admittedly, pretty gross, so I thought it might be an ingrown hair and it piqued my interest (every girl knows what's up with this--don't tell me you don't love a good ingrown hair). I turned on my light and I had all these deep lumps all over my underarm. Then I suddenly had the urge to check my other armpit. Same thing. WHAT THE HELL. In the night I was uncomfortable and, half asleep, reached for the last of my Avene Thermal Face Spray (basically it's water in a can that claims to 'hydrate') and sprayed it all over my underarms for relief. I don't think that's what the marketing team at Avene had in mind, nor do I think I could pitch them on the multi-use capacity of their product. The woman in this photo would never get lumps under her arms or anywhere else for that matter. I don't think this woman even knows what a fart is.

Throughout the day today it's gotten worse. And after a quick Google search this morning, this afternoon and again tonight, I am in my mind's eye, diagnosed with Breast Cancer, Lymphoma and some other parasitic disease I can neither spell nor pronounce. Because that's what bloody well happens when you Google things. I would not recommend Googling collapsed eardrum, either, if you maybe have what I have (unlikely) because that'll get you thinking about when you should schedule your next ear surgery (also unlikely). 

Image courtesy of Mashable

So this is my new normal. When I used to get the common cold (which was basically almost never), I would let it ride, and not care about it much or pay attention to it. If I got a rash I was like WHATEVER BRO PASS ME THE ALOE. If I stepped on a nail I was like and WHAT? I got my tetanus vaccine back in the day let's go paragliding. Nah, just kidding, I would never paraglide, that's only for white dudes in snapbacks from Omaha. But for real, I wasn't a hypochondriac. I wasn't the person who would be freaking out if I got a stomach bug or a splitting headache. It just wasn't in my DNA. My parents, especially my dad, never indulged me much when I was sick (except for every single time I cried wolf I was sick to get out of school and my ma would be like 'oh ya honey let's hang out all day together please don't go to school' -- true life stories from an only child). My dad's favourite thing to say to me as a kid if I fell over or hurt myself was 'Shake it off'. In my 7 year old head I'd be like dad, what if I don't want to shake it off, dude? What if I want to cry for another 20 minutes? It was useful later in life, though. *Except for that one time when I put off going into hospital when I was in liver failure, that didn't work out so well for me, I guess. So tonight I was eating ramen at home with my darling father and I was talking about The Blob-esque situation going on under my arms (see below for reference) and being extremely dramatic and asking him to speak loudly so I could hear him because I'm now deaf in one ear (I said I moved on quickly from illness, I didn't say I wasn't into the DRAMA of it all). 'So, do you think you're a little hypo now?' he asked me.

The Blob, 1988. It's not that bad under my arms right now, promise. Told you I was dramatic.

Which I hadn't really pondered that much, at least not in those terms. I've never thought of myself as a hypochondriac, but over the past 7 months I've been conditioned by my medical team to literally fear everything. They don't mean to do it, but they do. 'So can I use Nair?' the answer comes back 'Oh, there are so many chemicals in Nair, I wouldn't for now.' 'Can I get a smoothie from the juice place?' 'Oh no, you have to exclusively use fruit and vegetable wash now.' 'How about a salad?' 'Not unless you use your veggie wash.' 'Can I go to physical therapy yet?' 'No, there are so many germs in those places, I wouldn't just yet.' 'Can I got to therapy now?' 'Let's just put that on hold for a few months.' 'Can I go back to being vegetarian yet?' 'No, you know, you need so much protein in order to heal, I'd do another few months of 70 grams of protein a day.' 'Can I lick the side of the bus stop outside my house?' 'No, you'll definitely die from doing that.' 'Would you recommend not using a condom with the friendly hobo on the corner I'm considering sleeping with because I've been out the dating game for 9 months.?' 'That would be extremely irresponsible, even at the best of times, what is wrong with you, Nora?' No. No. No. Maybe later. Never. Absolutely not. I don't see why not. Let me ask someone. No. That's what it feels like, even though there have been some yes's, like going to work and allowing me fly to Miami 5 months after transplant.  It's obvious why I'm fearful when something small happens, since I've been barred from doing so much. I often feel like they are not even listening and the knee-jerk is ALWAYS no. I didn't participate in society for over 5 months and most of the time it was as if we were speaking two different languages altogether, me and my doctors. 

So today I called the doctor on-call at the hospital about these mysterious lumps under my arms. It's the weekend so obviously people aren't working and if they are I am certainly not the priority -- they're saving lives. My doctor is a top-dog and he has a lot of 'partners' who screen the inevitable hypochondriac phone calls he receives on a daily basis, and who I have never met and don't know my story. So of course some doctor I don't know called me back and was blatantly annoyed that I was bothering them on a Saturday. I get it, I am not particularly thrilled to be calling you either, but I was told only last week that I wasn't allowed on a flight and yesterday I ate some fish stew and now I'm considering calling the funeral parlour and penning my own eulogy and making a sweet playlist to play at the party after my funeral when I die of inevitable food poisoning of the armpit, so bear with me.

'What's the emergency, Miss Logan?' (I never got used to being called Miss Logan in the hospital, so formal and antiquated). 'Well, it's not exactly an emergency, but I thought I was supposed to call if there was anything wrong or amiss.' 'No, you're only supposed to call if there is an emergency.' I couldn't even get halfway through explaining what was wrong with me 'Well I have these lumps under my arms I think they might be my lymph nodes, they just sort of appeared overni-... 'Do you have a fever?' [ALL DOCTORS CARE ABOUT ARE FEVERS I SWEAR TO GOD] 'No.' 'Well all I can suggest is that you go to the ER if it's really that concerning to you otherwise you can wait until Monday and call the clinic during normal business hours.' She sounded exasperated that I was wasting her time with this trivial fluff, she's in the liver business not a the business of talking a 20-something with a rash off a ledge. And YES on the face of it, it sounds trivial but how the fuck am I supposed to know if it is or it isn't, considering what I've been through? And the other thing is, I've decided not to call on the weekend previously, because of this EXACT reason, and I've been chastised when I do go in and tell them my symptoms 'You should always call, Nora.' Sometimes it's nothing, a lot of times it's something and it's bad. Like infection and procedure bad. And when I was still super ill, and going through a whole host of other complications and I'd look at websites of other patients who have blogs, a lot of these people would say 'Always call your transplant team if you have ANY questions and they can tell you the answer.' I think it's wonderful and empowering to write about one's experience and I have a deep respect for the people who have these blogs. But that has not been my experience. Maybe these people's doctors aren't New Yorkers.

A lot of the time the doctors do know. I'm not hating on doctors. The doctors saved my life and they did a damn good job at keeping me alive when it was very touch and go and I really love them, maybe to an inappropriate degree (I always go for the hug, they always go for the handshake, it's so fun). But a LOT of the time they also don't know the answers, or they are busy and you feel like a nuisance. So today I'm throwing my hands up and resolving to ask 'Listen, what is the correct protocol for me to follow, because I feel like I get a lot of mixed messages.' Not that that will necessarily clear anything up the next time I stub my toe and wonder whether my hepatologist needs to know (jk I would only call him for that if I drew blood from the toe stub). On the one hand I'm to be vigilant and let them know about everything, on the other, if I tell them about certain things, I feel like I'm hitting a wall and I'm to go elsewhere for the answer or to call after 9am on Monday or go into the Emergency Room which is not my idea of a fun Saturday night. Or I feel stupid for worrying about it. I just want to say, that if there is someone out there, transplant patient or otherwise who feels alone and doesn't know where to draw the line in their paranoia or hypochondria -- whatever the manifestation of their fears instilled by them by their experience, conditioning from medical professionals or just bog standard mental health issues and a fear culture -- you're not alone and there is never a right way to do it. It's easy for someone to say ALWAYS ASK YOUR DOCTOR, as if that's the answer for everything. But are you going to have your doctor on speed dial if you want to eat that pickle with the sandwich at the restaurant that came straight from the jar because you love pickles but you know it's a little iffy and there's a high sodium content? God, I certainly hope not. Or are you going to call your doctor if you get a slight pain in your mouth the first time you go to the beach after being stuck in a hospital room and New York apartment and start hyperventilating and crying and it turns out just to be an ulcer? I don't think so. Are you going to never go to the bathroom in a public place again even though you have a tiny bladder and you live in a walking city? No. Are you going to go back to the dingy bar in Bushwick where people have clearly either just had sex in a stall or been doing lines of coke or both to pee? No, because you're not 21 anymore and it's not a classy place that you would like to frequent.

This is me at 21 in a stranger's flat in Paris posing with a Chucky doll in an ill-fitting belt. Because those are the kind of choices 21 year olds make. I'm 21 in the pic on the right too in one of the aforementioned gross spots I should probably no longer frequent sticking my tongue out.

You have to pick and choose your battles and you have to decide what's right for you and make educated decisions. This doesn't make it easy or straightforward, and it doesn't make you feel any less alone. Hopefully you will have friends like Barrie that you can Facetime and show her, her wife and another friend your armpits because you prefaced it as a having a 'skin question' and she'll offer to ask her doctor friend and he'll be out on a Saturday night but look at the gross photos you took with the self-timer function on your phone and at least tell you what he thinks it might be and say you may need an antibiotic but not to worry about it too much. Hopefully you'll have that piece of information to get you through the weekend and then you'll figure it out as the days come and if it gets worse, it gets worse and you do go to hospital, like the responsible adult you are. Or you'll be one foot in the grave until Monday morning and focus on that. For me, it's a constant battle in my head but my motto is to feel all the fear in abundance, expect the worst and do what I want anyway, because I stayed alive for a reason and it wasn't to hide in my room being afraid of the world. And then be pleasantly surprised when things turn out OK. 

It's only a few weeks until I can take the subway again and I never thought I'd see the day that'd I'd be excited about riding that cesspit of a public transport system. It feels like a final frontier in my recovery, but when things like this happen I am reminded I'm still in the early days, in the scheme of things. But listen, Spring is here and you know the old saying 'Sun's out, guns out' and the subway is a great way to meet guys wearing disgusting flip-flops which I think is extremely inappropriate subway attire, but I need a date. Going to make some business cards with a link to this blog post and the tagline 'Friendly hypochondriac looking for love in the big city. Doctors, medical school dropouts or people who have exclusively doctor friends need only apply.' Will let you know if I find a business card that can fit all that copy on one card.