acuteliverfailure

COMPULSIVE FACETIME FOR CONSULTS by Nora Logan

When I was seven years old, my parents moved from New York to Hong Kong for my dad’s job, and we set off on an adventure that would change the course of this little Queens Chick’s life. Two years later, we moved to London. At the end of the school year, my teacher had me point to where my family was moving to on a world map and all the kids in my class “oohed” and “aahed”. My seven-year-old brain could barely fathom that a plane could travel that far, much less that there was life beyond New York. The farthest I had travelled by that time in my short life was to Boca Raton in Florida to visit my grandpa. It was the start of a grand adventure, of living all over the world, gathering people up as I went. As I got older, I would get the two year itch — to move on, to keep exploring, to discover new experiences and people. I ended up going to seven different schools and lived in six different countries by the age of 18. I was what they might call a precocious motherfucker. Even though I was always aware of my privilege, and knew it was really just good fortune to have had the opportunity to grow up in such a global way, I still took it for granted in many ways. I thought it would always be accessible. I wouldn't change my experience: I’m inordinately lucky to have lived in other countries at such a young age and see the world in an outward facing way, and to be comfortable living in other countries and cultures. But it can make you feel adrift and like you have no real home. That’s where the friends come in.

Most international school kids will tell you the same thing: once you find the group of friends in which you feel at home — you stick to them like glue, since the rest of your life experience has been so transient. The proverbial glue can mean lots of long-distance relationships over WhatsApp groups, FaceTime, Skype and thank-god-for-the-internet messaging. When you repeatedly show up as the new kid in school and then fall in love with the people around you, only to be forced to move on, you hold on to the good ones.  And try to create some semblance of community wherever you go. I used to sob for hours on end the night before going to a new school. I’d feel particularly different and weird for a while and then slip right into the fold (ah, the resiliency of children). I never felt like I fit in, anywhere, because I was not always only the new kid but also foreign. I am foreign wherever I go, which I’ve come to see as a great gift. I fit in with a group of freaks who understand that experience and have a similar conundrum of not actually having a straight answer to the question: “Where are you from?”. I’ve luckily found them, and because of that — many of them live in other cities, countries, continents. If you ask me where I'm from I will have to ask you how long you have and to please never ask me where I'm from. 

So when I got sick, and was dragging my feet on taking my sorry ass to the hospital, I’d call and text consistently with my multiple long-distance relationships (and also with those who did live near me and also with anyone who would listen, the guy at the bodega on the corner, the cleaning lady at work—the world needed to know and I was getting those phone numbers). Two of my good friends, Jenny and Mike, had just started dating and I acted as confidante to them both. It was basically me just telling them both to man up and fall in love (which they have, successfully — well done guys). My matchmaking services are available for a price as long as you keep a guest room for me wherever you happen to end up and feed me and maybe pay me a stipend. 

When I’d consult Mike about my symptoms (who is definitely not a doctor although I treated him like one during those early days), it would mostly go like this: 

“Mori, I don't know what to do, what should I do?” 

“Nora, you should seek medical help immediately.” 

Then I’d laugh it off and change the subject. I’d keep him up-to-date on the deepening yellow of my eyeballs or how many public bathrooms around NYC I managed to vomit in that day. Through out my subsequent recovery he maintained that healing crystals would not and could not save me. He may have been right, but it didn’t stop me from taking them with me wherever I went for protection. I no longer carry a heavy sack of crystals with me wherever I go, but I do carry one in my pocket and spread them all round my house. Jenny allowed me the space to sob down the phone to her later on, as did many, many-a-loved one —in person or virtually. I certainly upstaged their new relationship with my liver failure, but thankfully they didn’t hold it against me.

At the time we were also planning a trip to Central America for which we had a Whatsapp group called “7 wonders of world tour” (terrible name probably created by my friend Faris). The group provided endless jokes — including the below photo to indicate what I would most likely be doing on the trip. It wasn't too far off from what I would, in fact, be doing in the coming months.

I would send them (and the cleaning lady) photos of my yellowing skin and pock-marked face. I’d get separate messages back “You don’t look so good,” and “What’s going on?!”, and “What do the doctors say?!”.  No one quite knew how to respond and it was difficult to really convey what was happening over text message. Technology does have its limits when attempting to accurately convey a total breakdown of one of your vital organs. Hell, it was hard enough to see in person. Still others would provide comic relief in moments when I didn’t know how to react to the whole horrid thing. 

As time has gone on — it’s now been three years since first getting sick, and two years since my liver rejection — I don’t speak to everyone as much and I no longer ask for consults because I have a team of professionals to do that. Some of that is circumstance: lives get busier, kids are born, moves are made, time feels in shorter supply. But the idea of knowing my people are just down the other end of the phone is enough to get by on. There were times in my illness and recovery I could no longer speak to anyone, because I had nothing to say — and things felt so, so bleak. I’ve since dug myself out of that hole (with considerable help from family, friends, mental health professionals, my social worker, and spiritual teachers). It helps that I am now able to live more and be out in the world — which means I have more to talk about than I did for a long time. Sometimes it’s still hard to pick up the phone, but I push myself to connect when I’m able, because I know it’s how to participate in my community. My world is no longer limited to the merry-go-round of doctors appointments, medication and setbacks. It doesn’t feel so tiny anymore, and I don’t live in the confines my bedroom, shuffling from my room to the kitchen to the bathroom and back again. Although my reality does include the medical appointments, the medication and its accompanying side effects plus the prospect of an occasional setback — the limitations of my experience are less confined. I’m grateful for all the Facetiming I did in my darkest days, and for the many times I didn’t pick up because I just couldn’t face it and for my friends who still stuck with me—and kept trying. And for the knowledge that you can come back to yourself — changed, bruised but still breathing, and maybe for the better. 

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.