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.
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.
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.
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).
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).
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,
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.