liver transplant

FOOD REFUSAL by Nora Logan

I could sit and ponder those hours in the ER for days on end. It's a time before - as in the time before I really knew about what my life would be like later, and how simple my life was before all this happened. After I got out of the ER I was transferred up to this gargantuan room on the 8th floor. I could barely believe my luck. It was huge. My mother and I both thought we were saved by this one doctor who could see how distraught I was by the 26th hour in the ER but actually, I think the more likely reason was because they had not yet ruled out infectious disease and they needed to keep me quarantined for fear of infecting other patients. As soon as they cleared out the possibility of an infectious disease, I was again transferred – to a step-down unit (meaning, one step down from the ICU) on the 5th floor – and was sharing a room with 3 other people.

In that first room on the 8th floor, I was still trying and failing to eat. My outright refusal of food was a real problem through out each room and each stay. Since I was in for such a long while each time, I got to know the orderlies who would bring around the food trays. There was a really angelic woman who would come by everyday, and she really had a vested interest in me eating. I didn’t like the idea of wasting food, which is inevitably what would happen each time I took a tray. So I just started ordering only bananas (always been a banana fan). She’d come in and say: “Only bananas, again? You don’t want anything else?” I’d always refuse, and then my dad would bring me oatmeal (a multi-year, multi-continent love affair - see previous post) or my aunt would bring me food from this place near her house, or the Tonight Show would send me enough food to feed an army. Any visitor I had got a food request through, and my close friends just started bringing food of their own volition, they knew the drill. Through out each hospital stay, I always refused food: on the one hand I felt too sick to eat, and on the other I couldn’t face the cardboard mushroom soup on offer yet again

My mother, on the other hand, was less discerning and at times totally enamoured by the stuff. I distinctly remember being brought a standard plate of food – which had a burger on it – and not even being able to look at it for fear it would make me vomit. She gladly took it and munched it down and tried to give me a big wet meaty kiss – which I rebuffed like any slightly salty-chained-to-a-hospital-bed daughter would. It was there and then that I realized that being confined to a bed would make for a lot of unwanted advances from every turn, so thank god the first one was from my mum. At the beginning, and after transplant, food refusal really was because I could barely stomach a thing. Eventually I knew the menu so well and had tasted enough of the dishes to know I was better off finding another way to get fed. The food they try to pass off as edible in hospitals is astonishing, and everything has sugar, which we know doesn’t help with healing, because it causes inflammation. And which is described, in an article from SugarScience, the online source for authoritative sugar research University of California San Francisco as actually toxic to the liver, and in some cases more toxic that alcohol. I once counted how many grams of sugar were on a breakfast plate and it added up to 40 grams. That’s just one meal -  and they plop this down in front of patients, who are often on opiates (which can cause an increase in sugar cravings and consumption). I’m not diagnosing blame on hospitals, and I know there are initiatives that are working to improve things, and that starts by cooking real food, like this New York Times article talks about.

It certainly isn’t just a hospital problem, it’s a global problem—but we have to try to find a better way for patients. It does them a disservice to think of food as an afterthought in the process of healing. I know from my own experience that I had to look for outside help to heal through nutrition beyond what the standard diet guidelines suggested, and that after chronic use of opiates over the course of two years, my sugar cravings were and still sometimes are off the charts. I don’t know what the solution is - but considering how much money passes through the doors of those institutions, there has to be a better way. For patients, I think the best thing is to order as many of the fruits and vegetables that are available to you, avoid all the sugary drinks that are offered and eat the meat sparingly (or hope that you’re at one of the hospitals that are working to change things). That was my tactic, as well as asking all the people in my life to bring me food and always keeping snacks by my side. But it took me a long time to realize this, and it wasn’t until my third stay that I made sure I had other options. Either way, I was hungry for the better part of two years—and not just as a result of hospital food. That’s just what happens when you’re really, really sick. 

THE ER PART II by Nora Logan

Recently my platonic life-partner Layla sent me a recording she took when I was in the Emergency Room. I started to write a post about the ER in 2016, just a few days before I was hospitalized for rejection, a lot of which I used for my previous post The ER Part I. As I slipped into acute liver rejection, my recovery morphed into relapse and the course of things dramatically shifted. I've often looked at the draft of these posts and even opened them, stared blankly and moved on. I think having as serious a set back as I did made it all but impossible to talk about the ER in a pithy way (as originally intended). Because the narrative changed, I no longer had my neat little bookends for the chapters in my story. Here's the one in which I enter the ER, here's the one in which I have the transplant, here's the one where I emerge from the hospital triumphant, never to darken its doorstep again. That setback taught me that I could land back in hospital at any given time, such is the nature of being a transplant recipient. But it's also the nature of being human. I could break my toe and have to go in and I could go in to have a hernia removed as a result of muscle mass around my scar. For me to wrap my head round those variables is what I had to eventually come to terms with. But then, I couldn't possibly imagine going over ‘The First 24 Hours' at a moment when I was again in a prison of my medical history. 

When I listened to the recording, it all came rushing back like when you are trying to dive into a pool but you actually do a belly flop and it hurts like hell. You know that being-bitch-slapped-by-the-water feeling? If you're anything like me (which maybe/hopefully you are decidedly not), it's a feeling of 'ugh I never want to experience that again but maybe I should try it just one more time to be sure'. The first 24 hours in a hospital, especially when you enter said hospital with a mystery illness are at once eventful and mind-numbingly boring. Just the conversation from the recording goes on for quite a while. I've transcribed some of it here to give you a sense of the many, many, many conversations I had with doctors who were trying to figure out what was wrong with me and save my life (and to avoid transplant). I've made mention of these conversations at length on this blog, and I am sharing it here as an example that when doctors are trying to get to the bottom of something, you best believe questions will be asked over and over and over. In my experience, doctors do not like a head-scratcher - like most human beings, they like to have a definitive, scientific explanation for something. Anyone who has been through any sort of serious medical experience (or even not-so-serious) know about these questions, and they get old fast. I can see it now in a new light: doctors are detectives and all they have as evidence is blood-work and answers from patients (who happen to also be the most unreliable sources in the world). Turns out they weren't trying to torture me for the sake of it! 

Despite the tenderness I now feel towards the medical team who were deciphering my blood tests and often unreliable responses, bear in mind that I was asked these questions repeatedly over a 2 week period. From an unimaginably large multitude of medical professionals. I don't know how I didn't lose my shit more often. 

Doctor: You know..warbled..little bit higher than I would like so I do want to keep you here to figure it out I fully anticipate figuring out what it is. So I don't want you to worry about that. [She's referring to my liver enzyme levels, which would continue to shoot through the roof.]

Me: Ok

So the question is what is it? There is a whole gamut of things that the liver could have problems with. Virus, clot, other types of infections, autoimmune disorders, there's like tons and tons of different things. So then the other question is teasing out what it is and what do we do for it? Ok? That's going to include probably a thousand blood tests. The ultrasound which we have to take a look at. There's going to be even more blood tests. 

Me: This is my mother. 

Doctor: Nice to meet you.

Mama: Nice to meet you.

So again, a thousand blood tests. Some of them come back quickly, some of them do not. So we're going to have to figure out what they are. The ultrasound, which I wait for that to be read by the radiologist, ok? [sic]

Me: Ok

Doctor: If we really need to, I can always do a liver biopsy. I have like 15,000 tests I can do so, now, what is easiest and what is going on for you? To start we'll do the liver tests, the blood tests. So you should anticipate getting a lot of bloods drawn today. So we'll be like vampires, we're just going to take and take and take.

Inside I thought: 15,000 tests?!!?!?! What the shit is she talking about??!!! Instead I said:

Me: I love it. 

I told you I was charming. First rule of ER: charm them. Make them love you. Be in acute liver failure.

Doctor: So we're going to try and get, hopefully, ideally if I can just get it from a liver blood test, then we're done and I can just get the answer for you. If not we do other tests, not a big deal. So my turn to ask you questions if you don't mind. I heard you went to Indonesia. 

Is that a question though, really, doctor?

Me: Yes. 

Doctor: Fantastic. Why'd you go? 

Me: I used to live there for 2 years and my best friend still lives there and my godson lives there and I have never met him so I went to meet him. 

Doctor: Oh, nice. 

Me: Yeah, it was great. 

Doctor: How long were you there for? 

Me: I was there for two weeks. 

Doctor: And when'd you get back? 

Me: On the 14th, I got back on the 14th, I left on the 13th of July. 

Doctor: Now, before you left, any problems? 

Me: Yep, on the 10th...

Doctor: Before you left from the US, before even going there.

Me: Oh, no. 

Doctor: Healthy girl. 

Me: No. Super healthy

Ok Nora, chill.

Doctor: Anything at all? 

Me: I was like working out all the time, feeling great [I mean, she doesn't need to know how great you are at exercising, Nora]. I had had a shoulder surgery but that was you know...

Doctor: Where'd you have your shoulder surgery? 

Me: I had a labrum repair. 

Doctor: Here in New York? 

Me: Oh, where did I have it? At Langone. 

Example of hilarious doctor patient misunderstanding here.

Doctor: Now, I'm gonna guess they checked blood tests before that procedure because almost always we do. 

Me: Yeah, it was last year, yeah, I think they did. 

Doctor: Did anyone tell you anything was wrong? What'd you do, just like do some crazy...

Me: Yeah I had multiple dislocations over ten years so...

Doctor: Oy ok, so you had some procedures. Got it, ok. Since then you were doing ok? 

Me: Uh, yes.

Doctor: And no problems with the anesthesia?

Me: No.

Doctor: Were you taking any pain medicines for the...?

Me: Yes, throughout the time I was recovering, I would say what like probably two months? I was taking the codeine and percoset. 

Doctor: And in 2 months you haven't been taking that afterwards? 

Me: No, it was last year. 

Doctor: Right, so 2 months after that, so like the past 9, 10 months you haven't been taking anything? Not even..

Me: No, I took Aleve, yeah, I took Aleve for quite a while because I ended up getting a pinched nerve from being in the sling.

Doctor: Got it. 

Me: So I probably took Aleve longer than I should have. 

Doctor: So Aleve but no Tylenol? 

Me: No, I don't like Tylenol. So I never really take Tylenol. 

Doctor: So when was the last time you took anything over the counter? Including Aleve? Not counting, like we're still talking about before you left to Indonesia. 

Me: Before I left? 

Doctor: Yeah. 

Me: I may have taken an Aleve or two in like the couple of weeks leading up. 

Doctor: But like one or two, not like everyday with a bunch? 

Me: No, no, no. 

Doctor: Ok. So you left feeling great, happy to see your godson and then I heard you got sick there. 

On and on and on the merry-go-round it went. 

The way it started was this. I went to work in the morning. I had an ultrasound scheduled at Beth Israel for 12pm. My mother met me there, and I went in for the ultrasound. Whilst I was waiting, I called my insurance and checked which hospitals were in my network. It was between Weill Cornell Presbyterian and St. Luke's. My mother looked at me and said: 'We have to get you to the fucking hospital. No more of this waiting around.' The upside for Weill Cornell was that we were already on the East Side (at Union Square) and both my mother and other family members had been there already for procedures and surgeries. The upside for St. Luke's was that it was closer to my parent's house. We decided that didn't matter, really, and chose Cornell. Thank god we did. No shade to St. Luke's, but I had no idea I'd be needing a liver transplant at this point, and I was going to one of the best hospitals in the world specifically for liver transplant. 

After the people at Beth Israel told us we would have to wait 48 hours for the results, we hailed a cab and told the guy where to go and to go quickly. We called my dad. We got to the ER. I sat in the waiting room chair and firemen in full fireman regalia passed by. A volunteer handed sandwiches out. I tried to take a bite of a tuna one and nearly threw up all over the linoleum floors. They called me in for testing behind the plexiglass. The got me a bed. We marveled at how *relatively* quickly they got me admitted. We weren't in any sort of state to fully understand the reason for swift action: bitch was yellow and getting yellower, and they didn't see me leaving anytime soon. And I haven't, really. I still go back to that hospital once a month, with pleasure (and sometimes complaint due to it's wildly inconvenient location).