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.
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.
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.
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.
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.
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.
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.