A funny thing happened on the way to last weekend. Instead of chilling at home and spending time with Mr Ratatouille, I landed in an alternate universe: the local hospital.
I had been feeling crummy for about a week when I saw my GP. My body showed evidence of internal bleeding that I couldn’t ignore. The last straw happened on an early morning run, when my friend noticed I was out of breath during a gentle jog. When I can’t manage a run, something is truly messed up.
A bit of background
A brief pause to explain that this scenario is not unexpected. In 1996, I was hospitalised with fever, chills, and unexplained weight loss. I was initially diagnosed with one liver disease that a specialist at the Mayo Clinic ten years later deemed incorrect. Even though my subsequent diagnosis sounded slightly less horrible than the first one, it’s still pretty shitty.
Bottom line is I have liver scarring and high blood pressure in that area, both of which you definitely do not want. I am at high risk of bleeding and take medication to try to prevent this. Good treatments for my disease do not exist, and no, I do not want a recommendation for an alternative therapy or supplement. I’m told I am not a candidate for transplant until I’m on the knife edge between death and life because the surgery is so risky.
While most people achieve their liver disease through alcohol or obesity, I got mine by choosing the wrong parents. Damned genetics. Am I bitter? Yeah, sometimes, but then I remember that everyone has something.
We’re all going to die someday
Two people I know have incurable lung cancer. Another has incurable melanoma. Several friends have Crohn’s Disease, others have diabetes, and others have survived breast cancer. A friend’s husband had colon cancer and suffered a nasty infection after doctors left a plastic drain inside him during one of many surgeries. Another friend had a near-fatal heart attack; a friend’s partner was close to the same fate if not for angioplasty and stents. A good friend died of metastatic breast cancer a couple years ago at the age of 56. A family member endured radiation for oral cancer which burned his face and throat.
My late husband, Sean, only made it to age 48. His sister died at age 49. I’m 52 years old and have outlived many souls worthier than me, in other words, people who have never muzzled or de-clawed a cat or who wanted to slip an advertisement for a psychiatrist under their neighbor’s door (Sean prevented that last act).
We like to say what doesn’t kill us makes us stronger. I’m not so sure. Illness can weaken us physically and pain distorts personalities. Marcel Proust wrote, “Illness is the doctor to whom we pay most heed; to kindness, to knowledge, we make promise only; pain we obey.”
This will only take an hour. Yeah, right.
The GP read through my medical history and called the gastroenterology department at the hospital. After conferring with them, she presented two options: 1) go to the hospital and be admitted for tests; 2) go to the hospital, have bloodwork and if it looks okay, schedule a scope for the next week. I voted for Option 2.
I was already late for a board meeting and texted the chairwoman to say I would be even later. Maybe I would attend the meeting briefly, if only to say “hi” and eat lunch, because I was hungry.
Better get the blood work done first. The GP instructed me to check in at the emergency department because they could expedite the tests. When I was settled into a bright red recliner, a very tall young doctor told me I would have to wait two hours for results. Also, they needed to stick a tube down my throat to place bands around bleeding veins. So much for my meeting.
I text Mr Ratatouille to let him know I might be late for our dinner date/overnight at his house.
“My simple GP visit has turned into a bit of a production. I’m hoping to get a procedure done this arvo and be able to grab my stuff at home before heading to yours. Will let you know if things change.”
Ha! Did things change. My red blood cell count was low enough to merit two bags of New Zealand’s finest A positive. Also, I would spend the night in the Admissions Planning Unit, a windowless area divided by curtains where you can hear neighbors on either side hacking up lungs, and nurses talking loudly at patients who don’t have their hearing aids. “Oh, Mr Smith, you’ve pulled out your IV in your sleep, and now you’re all bloody!” “Mr Jones, don’t drag your catheter on the ground. It’s not sanitary!”
Sending out an S.O.S.
My friend, Veneta, had agreed to have Ally for the night, and she rescued my dog from an empty house when I texted her my predicament.
I also give Mr R. the code to my front door and ask him to grab my phone charger, toothbrush and slippers. He can drop the stuff to me and run out because it is far too early in our relationship to be canoodling in the hospital.
He stays for three hours, slipping off his mask periodically to kiss me. I think he finds the hospital gown sexy. Just hours earlier, we were joking about me showing up at his place in a catsuit.
Nil by mouth until 9pm. Just as Mr R leaves, a tray appears with crumbed fish, mashed potatoes, pumpkin and apple crumble with custard. I am so ravenous, I want to wolf the entire meal. But the first bite sends stabbing pains beneath my left breast, so now I’m wincing, chewing and fondling myself at the same time. A trainee doctor arrives to see how I’m doing. I explain the pain and try to take another bite, inadvertently demonstrating my misery. “Maybe we should change you back to nil by mouth.” I nearly start to cry and she abandons the idea.
A chest x-ray shows no evidence the scope has perforated anything and the best explanation I can get for my pain is a nerve somewhere is shooting agony signals that are especially acute when I swallow. Even the smallest morsel of food makes me feel like a boa constrictor trying to digest a samurai sword.
I press a green button to call a nurse, asking for pain medication. She leaves for an eternity. By the time she returns, I am in a grotesque version of child’s pose, on my knees in the bed with my head down, bum in the air. It offers modest relief. So does morphine, which allows me to catch moments of sleep between nursing visits to check my vitals or administer medications through two lures inserted into the crook of either arm.
Mr R. returns in the morning. Doctors have already rounded to tell me I’m on a 72-hour protocol following a bleed which involves multiple bags of IV antibiotics and albumin to help strengthen my weak-ass blood. They say I probably won’t leave the hospital until Tuesday. I am gutted, but at least mon compagnon (my companion) is with me. Besides him, the best thing to happen is I’m moved to a ward on the third floor into a private room with a window. I have left the equivalent of the steerage compartment of the Titanic to occupy the VIP suite.
Publicity and hiding out
This happens to be the weekend the local paper published a massive spread of photos and articles about my book launch (Love, Loss and Lifelines: My Year of Grief on the Run). I take pictures of the paper from my hospital bed, cropping out anything that would reveal my location.
I do not post on social media that I’m in the hospital. The energy to respond to multiple messages is lacking, and as much as I love a good party, I am not the best hostess when trapped in an institution.
I did, however, ask a friend to bring a change of clothes, my makeup bag and a hair dryer, because vanity does not take sick days. I may be ill, but I don’t have to look that way.
Friends drop in with flowers and chocolate. Mr R. brings salted caramel Häagen-Dazs ice cream, yogurt, chocolate, a smoothie and a lily dressed in a pink gift bag. One night, he kicks off his shoes and slides next to me in the tiny hospital bed, which is too short for his 6 foot, two-inch frame. He hangs his feet, clad in ‘Dad socks’ off the bed. I rest my head on his chest and inhale, filling my senses with a dose of joy exceeding morphine’s effects.
A young nurse with curly dark hair and striking blue eyes pops in to check on me. “It’s date night,” I tell her, and she laughs.
The nurses, orderlies, cleaners, and even the young Draculas who siphon my blood each morning are friendly and competent. One of them tells me she’s returning to her native Columbia to visit for three months; another says she plans to walk her dog after her shift. Yet another asks whether I’m the woman in this weekend’s newspaper. She seems chuffed when I tell her yes, and asks what I will do with all my free time now that I’ve published a book. “Publicity,” I tell her.
Hospitals in America and Aotearoa: the same and different
This is the first time I’ve been hospitalized unexpectedly for liver disease since 1996. I was first in hospital in Grand Rapids, Michigan, where a gaggle of workmates shuffled in and out of my room, Sean leading the charge. He was my constant, even though we were just friends (I had a long-distance boyfriend). We had known each other a couple months and funny enough, it was October when I became a patient.
There and here, I have managed only transient periods of rest while wearing a hospital gown. For the first three nights of my New Zealand stint, I was on IV medication. The machine would beep in rhythm, indicating a clogged line, time’s up or nothing at all. Between the beeping and the checking of vitals throughout the night, sleep was often tough to catch.
I believe my hepatologist (liver specialist) to be competent and caring; the main issue with the New Zealand health system is we need more people, just like nearly every other health system in the world. One nurse told me she looked after seven patients, and I was in a ward of mostly surgical patients, many of whom needed more care than me.
A shortage of anesthesiologists means I will likely have to endure a repeat gastroscopy under IV sedation. This works for most people and even though I’m out quickly, I regain consciousness during the procedure, gagging and flailing with a tube down my throat. The general anesthesia calendar is so backed up I can’t get on the list.
The silver lining is the lack of existential dread when it comes to billing. I will not receive a bill for my care in the hospital. Not for my procedure, my medicines, the hospital stay, an x-ray, blood, ultrasound… The prescriptions I fill for antibiotics, a blood thinner and other medications cost me $5 each. For this, I am profoundly grateful.
Outta there
The ultrasound I had on my way out of the hospital revealed a blood clot in my portal vein. The fun never ends. The poor tech told me after the scan I needed to return to the ward on the third floor. I burst into tears. Reluctantly, I rode the elevator back to 3. A nurse looked at my chart and said, “You’re discharged. Do you want me to call you a taxi?”
I had my car parked in the hospital lot because I would only be there an hour. Or four days. I fled like I had robbed a store, before anyone could try to reel me back in.
I’m free. For now.
Thanks for the more thorough brief before our time together. 😅 It sucks but it’s clear it could have been so much worse. See you tomorrow. 🖤