bilirubin

FEELIN ALRIGHT, NOT FEELIN TOO GOOD MYSELF by Nora Logan

IT WAS A huge victory for me, getting out of hospital this last spin round. All the incredible messages of love and prayers and the 'feel betters' and the 'speedy recovery' and the positive energy coming my way helped me to stay positive, which I succeeded at sometimes, and sometimes not. My friend Claire came and stayed with me in hospital, on a side bed, 6 months pregnant, 2 kids at home in Australia and held my hand and cried with me. Tara came right after I got out for a few days and did the same. All my people were by my side either physically or virtually or spiritually, again, in a second, without question. Their generosity of time, love, spirit, food, flowers and the material unfaltering and still as astonishing as the first time. I was there a total of 35 days. I count those 5 extra days because when you're in hospital minutes can feel like hours, hours can feel like days--you're fully and completely institutionalized, cut off from society, and you really feel the weight of every day.

I was finally discharged on the 11th of May, the day after I last posted. I felt buoyed and excited and full of promise, and truly elated and as if I had conquered the unconquerable, with a lot of help (pharmaceutical, medical, spiritual, the friend and family plan etc.). Like a recent university graduate, before they comprehend the reality of what it actually means to be a graduate: the mountain of student debt that lays before them like an expanse of unending open road, the reality of 'making it' in the 'real world' and the soul sucking job hunt and the lack of anyone telling you what to do or how to do it. You took that Film Theory class and waxed lyrical about Truffaut for 2 hours every Wednesday? Yeah no, that did not prepare you for how to do your taxes, better luck next time buddy. Unlike a recent university graduate, I knew that things wouldn't get better immediately, I could be realistic about that not only because that's what my doctors have repeatedly told me, but also because this ain't my first rodeo. I got home and immediately felt extremely overwhelmed and crashed for 3 and a half hours, that all too familiar feeling of the sustained sleep deprivation of hospital setting in once you're back in your own bed. But I honestly didn't know it would be this bad (much like the graduates of 2016, good luck to you). Everyday since getting out, I've been waiting for the miracle to come. It's extremely familiar but then again not at all. When I first got out of hospital in August 2015, it was too early for me to go home, there were complications that then occurred and I went back in a short week later for another 10 days. It's a story I have yet to get to. But that time it was a brave new world, and my body was ravaged, the scar across my abdomen was still raw and healing, and I was weighing in at about 200 lbs (about 91 kg) from excess fluid, so I couldn't really walk or shower without help. I had to learn my medication and all my doses, I could barely eat a bite of food and there were multiple complications to come down the road that no one could have foreseen, least of all me. 

This time, it's more of a slow burn and I do NOT feel better than I did in hospital, I was running on adrenaline and pain medication and propelled forward by the prospect of being discharged. In fact, some days I feel a lot worse, physically. Although I feel a LOT less daggy and gross because I can shower and I'm not in a germ factory otherwise known as a hospital room. I'm beyond grateful to be at home. The difference from the first time is that my approach to it all has changed. I'm more realistic about how important it is for me to heal and I'm allowing myself the space to heal because there has got to be a way out of these muddy waters. The truth is that getting discharged from hospital does not mean you automatically feel better. First, there is the physical trauma you just endured that you have to get through (whether it's procedures or surgeries or infusions or just the harsh reality of being in a hospital); then there is the emotional trauma of that, too, that you need to try to come to terms with in any way you see fit, which maybe you don't feel like thinking about, or you don't have the resources for or the wherewithal to do; then you have to figure out a way to actually recover and that is definitely not a straight line. When I was first discharged in April, after the 9 day stint I did, the next day, overzealous and manic and wanting to exist outside the walls of my apartment or a hospital room. I went out walking on the Upper West Side, I met a friend for lunch, I went to another's to collect some delicious passover food she kindly shared with me, I walked a total of 20 blocks and I even went into a couple of shops. A short 2 days later I was back in hospital.  

A lot of people (family, friends, doctors, the sweet Yemeni dude at my bodega, my mother's dog walker) have a lot of opinions about how I should be doing things. These opinions are borne out of love, concern and the loss for words that often accompanies facing someone with an illness, and I don't blame them for it, even though sometimes I just don't want to hear it. I get it, I've been there, I've not known what to say before. I have trouble sometimes not letting those voices in (because it's my own voice, too) that say 'You're not doing enough, Nora', 'You should be doing it this way, Nora.' That's not necessarily what they're saying, but that's what I hear. They're simply making suggestions in a situation where there is no roadmap. In fact, the map has been burnt to a crisp and we live in a world where Siri never existed and GPS is just some acronym for a school Gwyneth Paltrow founded in the hopes of spreading her healthy living to the young minds of the future (alternate realities being what they are). But I'm trying to take on the advice that maybe I do need to hear and tune out the ideas that I know are not right for me, because I'm the one experiencing this, I am the one walking this path and I am the one who knows what I have to do to get better, even when it all feels supremely uncertain. 

I am back to taking almost 40 pills a day, give or take. It's not 40 different medications a day, but it's a gargantuan amount of pills to take everyday. I am better at getting them down me now, I'm used to it, and I'm not as fragile as I once was. But I'm still fragile. We are all fragile when confronted with massive doses of chemicals that keep you alive and your friendly new liver inside you and simultaneously fuck your shit up to a whole new level! We're all fragile for any number of different reasons. And they all but eradicate my immune system. So in many ways, I feel back at square one, but I have the benefit of experience to aid me in getting through it. Which is also to my detriment because I still feel the constant fear of something going awry at any given time, because historically, that has been the case. I am not sure why I feel so sick to my stomach round the clock, or have strange pains that pop up out of nowhere, why my digestive system seems to have broken down altogether in the past 2 weeks (of which I'll spare you the details, but you have an imagination--use it), why the smallest task will take the wind out of my sails altogether or why I need to take daily 2-3 hour naps and still don't feel rested or alive. This is not me, this is not the person I had become accustomed to over my healthy 28 years, why some days I'll feel a bit of a sore throat and think 'Right, that's it, incoming flu, I'm screwed'. And frankly, it's unfair. This current reality is not what I had envisioned for myself. I think a lot of these symptoms have to do with the medication, and the fact that two plastic stents were place in my bile ducts as a preventative measure by my doctors in case of obstruction. And I am promised things will get better with time, and even on the hardest days I try not to lose sight of that. And if I do, one of my parents will remind me that it will. 

To give you some context on the medication, after transplant last year I started out on about the same amount of medication. But because of the fact that I went into Acute Liver Rejection in April, they then added the the thymo-globulin infusions for 10 days which I wrote about here, which is an immunosuppressant medication usually given to kidney transplant patients. They then added a sizable dose of Evirolimus, another immunosuppressant (also known as a spell Harry Potter and Hermione Granger get stuck right into at Hogwarts that gives Snape the incurable flu, at least that's what it is in my head, it's not on the medication box, surprisingly). So now I've had 5 immunosuppressants put on my plate and that's what we're working with (the thymo infusions, the Harry Potter drug, tacrolimus, Myfortic and Prednisone, which are steroids). Plus there are pills for indigestion, which don't work or if they do and the indigestion I'm currently experiencing is anything to go by, I'd be in a world of hurt if I wasn't taking it; one for itching because I'm constantly itchy all over my body because my bilirubin count is still so high, which means my eyes are still yellow which is purely an aesthetic concern at this point, there are magnesium and calcium and Vit D supplements, a pre-natal pill because I am obvs family planning right now, it just makes sense, the timing feels so right to have a baby, you know? Nah, it's a multi-vitamin disguised in pretty baby packaging. There are two anti-infection meds, one called Fluconazole (the cool kids aka docs and nurses call it 'Fluke') which I was already on forever because of a fungal infection they found in my blood last summer and the other is Valcyte (no sweet abbreviation for that one unfortunately), because I contracted CMV in December and your risk of getting it again is much higher when you've had it already and you're immunosuppressed, and having it as an immunosuppressed transplant patient is not pretty, or easy. Before I went into rejection, I think I had gone down to something like 10 pills a day, so it's a big jump.

Source: Mayo Clinic.

Source: Mayo Clinic.

I've now got a stye in my eye that for all intents and purposes is not a big deal, but when you're dealing with a broken body, it feels big. The steroids make you a bit manic, and extremely shaky. Sometimes I have been unable to get my fork to my mouth without losing a bunch of food on the way to my mouth. Some days or even hours are better than others. I've also got this strange thing happening where I get a massive hole of hunger every couple of hours, and then as soon as I eat a few bites I feel nauseous or indigested or both. My nose is bleeding (WHY IS MY NOSE BLEEDING). And according to my blood work from this week, I'm not absorbing any nutrients most likely because of said digestive issues. Which is unfortunate because I was wrapping my head round eating super healthy, I even managed to cook (or rather, direct my sweet friend Tara on what to do as I stood up and sat down, stood up and sat down), making two really healthy soups that would give me proper nourishment and was trying to really have a swing at it (and because it's how I love to eat, anyway). Then I found out I may as well have been eating wood chips for breakfast, lunch and dinner. Thankfully my ultimate and sometimes borderline irrational fear of contracting C. Diff has come back negative twice, which is really lucky because that infection was really the lowest point of my life thus far. My doctors and everyone at Weill-Cornell are being extremely kind and they know I don't want to go back into hospital, that facing another hospitalization at this point might truly break me. They know this because I straight up told them that last week, which I'll talk about in another post. But they can't tell me why I feel so awful and we are just 'holding tight' (their words) for the numbers to get better, which they are, slowly (which was also to be expected, and which I do not take for granted). I have a theory that although they're familiar with the complications that arise, one might call them experts, they don't really like to blame the medication despite the insane amount of side effects that are clearly stated on each one, at least that's been my experience. But they are doing everything they can to keep me out of hospital, and I've been going into the clinic 2-3 times a week to get my blood work done. 

At many points in my early recovery, people would ask 'So what do you get up to everyday?' or 'How are you filling your time?' I am aware enough to know that it's a completely harmless question and it's not to pass any judgement on me. Again, it's a question for question's sake. But I'd find myself almost making things up sometimes, because of pressure I put on myself and also the pressure that society at large puts on all of us to be doing, doing, doing all the time. The irony is though that  I didn't feel well enough to even look at a screen and watch TV, I couldn't actually bear it, and if I couldn't bring myself to even do that, all bets were off. And I did do some things -- I took some online classes learning how to code and a Spanish class, as I started to feel better and weight dropped off me I did make it out to walk and regain muscle, I did start to meet friends in a setting other than my home, I did watch some television and probably binged a couple of shows, I remember I watched the Entourage movie at 1130am on a Wednesday and it was just as glorious and awful to see Vinnie and the boys back together again. I read books, I wrote, I had a lot of people come visit me, I started making my own beauty products, I bought a lot of presents for people online which turned into a compulsion and I had to then stop, I looked at Instagram far too much and went into Instagram K-holes where one time I somehow got to Gigi Hadid's father and actually looked at his photos for 20 minutes (WHYYYYY?). So, yeah, historically, I've become accustomed to expecting setbacks, this last one being the worst one so far. But I also have historical context that things get better, that nothing is forever. And I have the benefit of both those pieces of information to allow myself to sit with the sorrow and know that joy is within reach, too. That everyday won't always feel like a slog, that I will feel like eating not just for sustenance one day, that I will be able to go out and live, in a different way, but live, eventually. It just takes time. And rest. And meditation. And surrendering to the physical body in order to get to the other side. 

My friend Bettina sent me this when I was in hospital. Good lookin rules. I'll leave the bone one though.

My friend Bettina sent me this when I was in hospital. Good lookin rules. I'll leave the bone one though.

I had a friend when I was 17, he was one of those fatalistic, romantic dudes who had a bit of a death wish. We met studying in France and took a trip to California with a bunch of us and drove from Malibu to Santa Cruz and then what was supposed to be a few days in San Francisco. He bought one of those police radar things for the car so he could go super fast. At a certain point, leaving Santa Cruz to go to San Francisco he got lost and went up a hill off Route 17 and pulled into oncoming Southbound traffic to get on the Northbound side and we were hit by two cars. Our car flew into a deep ravine and thankfully we were stopped by two trees, I saw the whole 'life flash before my eyes' thing. The two boys in the front had minor injuries, and myself and my other friend in the back were luckily unscathed. A line I remember him saying a few times on this trip was 'I think I'm going to die before I'm 27', probably some romantic ideal gleaned from the famous people who had died at 27. I remember thinking it was an odd thing to say, but sort of feeling the same way, that maybe, in my 17 year old, impressionable mind, I maybe wouldn't make it to 30. I think I probably even agreed with him and said something like 'Ya I probably won't either but I think I'll make it to 30'. Ugh, teenagers. When I have, in the past year, and more recently, in the past 2 weeks, allowed thoughts of death to creep in, which they inevitably have, I've often thought back to these conversations. And how I could so flippantly just write off my own life like that (in defense of my teenage self, 30 to a 17 year old seems 100 years away. Even to a 23 year old, 30 is OAP status). But there was a death, the death of my old life: it doesn't exist anymore and I can't try to fit it in to where I am now. It doesn't mean everything has to radically change, but I have radically changed, and that is not something to be ignored or brushed aside for the sake of some old life that no longer exists. It doesn't make me any less me, it doesn't mean that my personality is all of a sudden completely different or that I don't miss the old life or honour the experiences that I've had that make me, me. I don't think I'm going to die anytime soon, I have a lot left to do before I do. I can't be certain, though, neither can any one of you. I'm hoping to clock out closer to 75 or 80 but one just never knows. I mean, Manhattan might be submerged under water by then, so who's to say. But there is absolutely nothing like having it all snatched away from you in the blink of an eye and then dealing with the repercussions of that to make you really take a step back and understand truths that you just didn't even see were there before. And hope for a better day tomorrow, because that's all any of us can do, really. 

DING DING, STILL HERE by Nora Logan

So I wrote a long email to all my friends and family (who are also most of my blog readers, so you're welcome and I'm sorry?) That was almost, radically, a week ago and I haven't really had the time to put my mind round a proper post what-with people coming in my room every five minutes (PAs, doctors, nurses, nurse's aids, whole teams of doctors together, plumbers, cleaners, visiting friends and family and one very special guest who is here to be by my side (although conveniently for me she's left to have lunch in the big city and go to a 'baby conference', no idea what that is, all I'm imagining is a lot of baby clothes and different brands of stretch mark cream). We've had a LOT of chats to get in. You can check out the whole story of how Claire came to be here on my Instagram account: instagram.com/noranala as well as Claire's instagram.com/jetsetmama. I even have my own hashtag on her insta. Which is jokes. Just to give you some context: in the span of time it took me to write that paragraph, my nurse came in to take me off of a Magnesium drip I was on on my IV, a nurse's aid came to take my vitals and then my mother and my auntie walked in to say hi. Because my mother is now also a patient in the room next to me, because that makes perfect sense in the story of our lives and is a totally normal thing to happen. Not freaked out at all by it. At allll. More on that later. 

Claire and I having fun together on phones, eating ice lollies, bonding deeply.

Claire and I having fun together on phones, eating ice lollies, bonding deeply.

A couple of the aforementioned friends suggested I post the email on my blog to elucidate how real and true to form this blog is (and how I just luuurve 2 write). But I do want you guys to know it's real and I mean every word and what could be more intimate than sharing with you an email I sent to my entire family and friends about the state of my health? I daresay: not much besides naked photos and this is not that sort of blog and I am a classy lady, so get your mind out of the gutter. Herewith, an email dispatch from last Wednesday about what exactly is going on here at New York Presbyterian Cornell, or as I affectionally call it, Club Cornell. A lot more has happened since this email, and I'll try to keep up when I can. 

Looking totally radioactive and kinda gross. Hospital stays are not good for your usually pleasing aesthetics.

Looking totally radioactive and kinda gross. Hospital stays are not good for your usually pleasing aesthetics.

I've put in photos for you, dear readers, for your personal enjoyment. I don't put photos in personal emails (most of the time).

Dear friends and loved ones,

A lot of you have been asking for updates and info (and some haven't!), so rather than texting all of you individually I thought I might update you together via email since I am feeling up to it this week and so you have a clearer view of what's going on (on that bcc flex so it doesn't turn in to one giant thread, you're welcome). I love being in touch with all of you but I want you to also understand what's going on medically. You could also read my blog (shameless self promotion here) thinskin.org as I'm trying to post there when I can. Hospital is a full time job though so will post and email when I feel I can! For now here's some concrete information I received today from my doctors. I realise it's difficult to be far away (or even in the same city) and try to conceptualize, especially when I am sometimes vague or feeling crap and not able to give a clear view of the situation.

Card courtesy of  Brit.co

Card courtesy of Brit.co

So I've been in and out of hospital since the beginning of April as you all know and I'm experiencing Acute Liver Rejection, which sounds worse than it is, even though I guess it's pretty bad. The strange part of it being that it occurred at such a late date in my recovery (usually happens in the first 1-3 months). My young, robust immune system is attacking my new liver and recognizing it as a foreign entity. So I'm doing a doozy of a drug called thymo globulin in the form of an infusion which started out as 14 hours and has now gone down to 9 a day, and I am being monitored closely in order to make sure I don't experience the myriad side effects associated with this medication. The latest news is that my doctors didn't round until 2pm today which is irksome because I had big plans for the day and was going to try to walk down York Avenue like a civilian. And since they wake me up at 530 am to weigh me and take vitals, you can imagine how impatient I was by 2pm. But I did get to see my main Hepatologist, and he's always a barrel of laughs (he actually is!), certainly a character. He wears bowties and great cologne. As I predicted this morning, which Tom Logan can attest to, the first thing he commented on were the Himalayan Salt Lamps I have in here and he said he has one too in his kitchen but is not sure their healing powers are strong enough for me at the current moment (dude obviously hasn't been to the Himalayas). 

Photo I took in the Himalayas in 2005 after a 3-day trek. One of the hardest things EVER that I did with Pema, who you can read about  here  and Zein (see pic of her beautiful face below and who will certainly be featuring heavily in this blog in the future).

Photo I took in the Himalayas in 2005 after a 3-day trek. One of the hardest things EVER that I did with Pema, who you can read about here and Zein (see pic of her beautiful face below and who will certainly be featuring heavily in this blog in the future).

There is still no discharge date in place, but I'm hoping that by the weekend I'll be able to be in my own bed and Dr. Brown said that that is a distinct possibility. Here's hoping. [ED. Note: this did NOT happen, I am still here. It's Tuesday]. I'm going to have to do the full 10 doses of the infusion of thymo globulin (they were originally thinking 7 doses). I'm still waiting to be hooked up for the 9th one today. They are not that happy with my liver enzyme levels right now, or my bilirubin count but also very confident they can fix it. Possible liver biopsy scheduled for Friday (going for Guinness Book of World records of most liver biopsies in one month obvs [Ed. Note: Apparently I would not make that record, for which I count my blessings] and then if the numbers are still not that good they may still let me go home and then put me on another immunosuppressant that I don't remember the name of but sounds like a character from Harry Potter.  I told my doctor that and he said he hasn't read Harry Potter which was honestly the most surprising thing about our conversation. Although I heard him say just before he came in to the PAs to order the biopsy outside my door, so pretty sure it's a done deal and they're sparing me the details/trying to be vague. It's vague city over here sometimes. I won't have to be in hospital for that which is the main thing and then the numbers will hopefully continue to trend down. The biopsy will determine more accurately whether I'm still in acute liver rejection, which is harder to figure out just going off the numbers. He's committed to getting me better and is the best in the liver biz so I am confident he knows what he's doing. It's unfortunate that I haven't responded better to the treatment but trying to take it a day at a time and focussing on having a positive outcome. It was upsetting news to hear, but I am rolling with it since I have no choice but to surrender. He is still surprised that things don't look better on paper, but paper doesn't mean absolutely everything (except to the doctors). 

About to get a chest X-Ray. My lungs are soooo cute.

About to get a chest X-Ray. My lungs are soooo cute.

So that's the latest: more of the same. I love you all and thank you for everything and all the support and well wishes (and food!!) thus far. All of it keeps me going! Morale is up and down, as is to be expected in the hospital when you're chained to a metal pole for much of the day. My appetite is also up and down but I'm eating 3 square meals of food I get people to smuggle in for me so that's a HUGE win. And getting loads of amazing visitors. And running into old doctor and nurse and cleaner friends, which is so nice. I also promised and insisted on throwing them a Christmas party last year when I was on very heavy pain medication which never came together (surprising, I know) and avoiding the subject :) :) :) I've also listened to Lemonade 4000 times, and it hasn't got old yet so that's good. Meanwhile my darling Claire is arriving tonight to help take care of me for 10 days, hang out with me and help support my parents -- I'm so excited! And they just walked in with the thymo so it's time for me to shut the hell up and get outta here (aka take a nap).

All my love,

Nora xxx

Ol' Bazbags. One of the 'amazing visitors' mentioned in the email.

Ol' Bazbags. One of the 'amazing visitors' mentioned in the email.

Claire the day after she arrived, basking in Club Cornell's glow.

Claire the day after she arrived, basking in Club Cornell's glow.

Zein and Hana, more visitors also looking and being really cute.

Zein and Hana, more visitors also looking and being really cute.

So that's me done for today: on my 34th day in hospital over the past two months, I'm feeling alive and I do feel like discharge is around the corner. More to come when I'm not having the entire hospital come in and out of my room taking blood, vitals, telling me the score etc. round the clock, amazing food being delivered by friends and family, and other friends coming to visit and distracting me from the task at hand. Plus the small matter of a minor addiction to Instagram and Snapchat. Which is to say, probably never.