…No sooner than I had fallen into a calm, rhythmic-if-short-of-breath sleep, my transport aid arrived. She was lovely, a petite Hispanic woman, with the patient, compassionate demeanor of a second-grade teacher. I was so grateful for this as I climbed into the seat with more effort than I tried to reveal, and she helped Madge loaded my things onto the cart – a large, rear-steering, plastic contraption not unlike the racecar-model shopping carts at the grocery store. She made pleasant conversation on the long trip down the main corridor of the hospital, to the elevators and up to my room. The “CF floor” on my hospital is in the main, oldest building of the hospital – what used to be “the hospital”, period – and so has been through several rounds of renovations. Half of the floor has been renovated in the last 5 years or so, and they’re all on one side of the floor, i.e., “the good side”. They’re not spectacular, but they have nicer flooring, warm wall coloring, more modern “furniture”, etc. The others…it’s been a while. Lots of powder blue, and rather, erm, institutional? So I’m more relieved than I care to admit when I’m wheeled over faux-wooden floors into a warm taupe room… on the good side.
I’m wished well and return my thanks, and set about my check-in routine – namely, I gown up, glove up and get to scrubbin’. At my hospital, all admitted CF patients are placed on all of us are on contact precautions. This means that anyone coming into our room must wear gloves and a burka-like disposable yellow gown designed to attract and hold onto the nasty little microorganisms floating about through the air (like a Swiffer for airborne germs!). It also means that we are not allowed to leave our room except for medical tests and procedures, and to go on staff-supervised, 30 minute walks around the floor, an attempt to keep our muscles from shriveling up like stale raisins as we sit in bed 23 hours a day (unless, of course we’re overachieving badasses who get up and sit in a chair for a while, too). If and when we do leave, we have to don the yellow gown and gloves as well as a mask.
There are two reasons for this. Primarily, it is to protect us from the cesspool that is “hospital” when we venture out of our cells rooms for tests and procedures, but also from the transient, inevitable hangers-on that the staff pick up and carry from room to room. It is disturbingly easy for CF patients to transmit pretty opportunistic pathogens, or as I call them, elitist bacteria, amongst and between ourselves. They want nothing to do with you healthy folk; I/we could all but cough in your face (assuming you are not also a CFer, immunosuppressed, or 94) and you wouldn’t even get a head cold. But most of them take root pretty quickly in our lungs, sinuses, or both, wreak havoc and refuse to let go, a la Ben Stiller in Meet The Parents, and all it takes is one errant swinging stethoscope; gloveless, unwashed hand (shudder); or gownless ass on my bedcovers (then my hands on the covers, then on my face) to accidentally create a pretty nasty situation.
Me: Sir, it’s nothing personal, I just really need you to go ahead and go with the antibiotics and get out of my body and-
Elistist Bacteria: The only way that I would ever let go of my bag this carcass would be if you came over here they sliced you open right now, bathed your organs in antibiotic wash… and tried to pry it from my dead, lifeless fingers me from the welcome mat of rubber cement mucus you and yours roll out for us. Okay? If you can get it from escape my kung fu grip, then you can have it. Okay? Otherwise, step off, bitch.1
The other reason is that while most of our “bugs” are of the elitist variety, due to a series of unintended and unanticipated consequences in infection control policy and general hospital “ecosystem” design, there are a few that are fairly “popular” among our little population that actually can be harmful to normal people, though usually not as severely, and also to the other patients with whom we share the rest of the hospital, its staff, and its equipment – most of whom are obviously not in their personal best health at the time.
And so, since this floor, heretofore referenced as “my floor”, is populated by roughly 60% CFer’s on a light day, and Housekeeping gets a whopping 20 minutes to clean each room between patients, I don’t touch a damned thing until I’ve sanitized it with my hospital-grade sanitizer wipes. Remote? check. Phone? check. Bedrails? check. Doorknobs, faucet, drawer liners? check, check, check.
Unsurprisingly, it takes much longer than usual, as all the standing and the bending and the back and forth wiping proved pretty exerting. Once I’m satisfied that I’ve done my due diligence in avoiding the cystic-plague, I alternate between scuttling around, busying myself with really-not-so pressing tasks such as unpacking my clothes and toiletries; and taking all-too-frequent and unsettlingly long breaks, propped against the bed, catching my breath and calming my heart. When there’s nothing left to unpack or organize, I resign myself to an unknown period of an elasticized, braless existence and change into my hospital uniform of leggings, a tank top long enough to cover most of my better side and thick enough to keep me from silently announcing when I get cold, and a specific brand and style of a super soft, super thin, raglan, long-sleeved t-shirt. And slippers, because everyone knows that hospital floors are made of lava. Duh.
I climb into bed, and I wait. This time, it’s not long before my nurse is able to come by and go through all of the regular check-in business. It doesn’t take long when you’ve only been gone about 8 weeks. We quickly run through the handful of changes in my daily medicine routine since last time; I hand over the the non-formulary meds I brought from home for pharmacist inspection, and she leaves to drop them off and returns shortly thereafter with the supplies to access my port-a-cath. While she’s gone, I go ahead and remove the numbing cream that’s been hanging out under an oversized Band-Aid since sometime between my biscuit and my nap. Hearing her gowning up to come in, I strip down from the waist up, and assume the position – flat on my back in the bed, shoulder blades rounded together beneath me, doing all I can – practically and superstitiously – to make my port as easy to anchor and access as possible.
It takes three tries and another nurse, but we finally get accessed – with a great flush, but no blood return. For people like me who have to have IV infusions and blood draws fairly regularly, a port is a godsend; its an implanted IV access that sits just below the skin, can (usually) be accessed with one quick, blind poke, and that one stick lasts me the next full week’s worth of pokes, digs, blown veins and infiltrated IV’s. With each access, it’s crucial to ensure two things: a good flush (being able to push fluids in easily) and a good blood return (being able to draw back blood easily as well). For a while now, I’ve had a hard time getting a good blood return on the first access when it has been a while since the last one; apparently my immune system is Johnny-On-The-Spot with the whole “scabbing” thing, and since my port is a foreign body, and my cells aren’t smart enough to distinguish a catheter from a splinter, it’s no exception, and often ends up with a light sheath covering the end. Inconvenient as all get out, but easily resolved with a declotting medicine injected and left to hang out a little while. Unfortunately, since improper or over-use of this medicine can cause people to bleed like cartoon zombies, there are a ridiculous understandable number of hoops to jump through before obtaining it, so by the time we finally do get it and are able to inject it to let it start “sitting” in the line, it’s been about three hours since I first rolled up on my home floor.
In the meantime:
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the Nursing Assistant (NA) brought the portable scale;
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The lab techs come by to draw all the blood that has to be from a stick (rather than my port, if and when it decides to behave);
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I order my “late night” dinner tray;
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I spit in a cup;
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I pee in a cup – Whew! NOT PREGNANT! (*sarcasm*);
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I receive my dinner tray;
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I meet and greet with my MD de jour;
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go through his round of questions;
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I’m prescribed and get started on oxygen, a first for me;
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and we discuss and verify pain management plans for once my port is useable again.
Having spent the previous five days with my shoulders roughly 7 millimeters from my ears, despite my best efforts to catch myself and resist the natural Quasimodo-esque inclination, I’m left with an unrelenting, throbbing tightness in my right shoulder and upper back – and it had become markedly worse in the hours since I left the house. Additionally, I have two distinct areas on my trunk that are quite painful as well; one a more intense and constant version of the cramps you can get from running to fast and hard outside on a cold day, except in my chest instead of my abdomen; another on my left side between two ribs that felt pretty similarly to how I would imagine a stab wound would, on the inside, minus the sliced skin part. By the time the declotting med is finally available, I’m fighting back heaves.
However, it has to sit in the line for at least 30 minutes before attempting to draw a blood return again, and *must* be drawn back out (rather than flushed through like most others), lest your blood thin to the consistency of koolaid. Therefore, once it’s in, your port is closed for business until the whole blood return shebang is taken care of; and once it’s been ordered (regardless of how long it takes to arrive), your port cannot be used for anything else, whether a quick milligram of much-needed pain medicine or simply running fluids for dehydration. It makes sense, as doing so could very well push an actual clot into your bloodstream, which never really ends well; however, when everybody knows it’s just one of these overachieving sheath things, it can be a little frustrating. Fortunately, it very rarely takes longer than the first 30 minute round to do it’s job in my case.
I was then asked what I wanted to do about my pain. I had been prescribed an IV pain medication, which literally begins working in seconds and is finished in minutes; and while I also had an oral medicine available, they take close to an hour to begin fully working. Moreover, the pain had worsened such that I wasn’t confident the oral dose would help much, anyway, since it was what I had been taking at home earlier that day with little relief. Since it was an either/or situation – if I opted for the oral and it didn’t work, I was… *poop* out of luck until the next dose of anything was available (four hours later) - I decided to wait until after the declotting process and take the IV option; even if I had to wait 45 minutes, I’d be getting relief faster than with the pill, and if I had to wait the full 60, I’d break even. And yes, I really do get to make these sorts of weighted, pro/con calculations when my brain feels like it’s straight out of a 90’s frying-pan drug PSA. Thankfully, per usual, it does only take the first 30 minutes, and we’re good to go.
Except we’re not. What the doctor said he would prescribe, and what he did prescribe, were two different things. What he said he would prescribe was an IV pain medicine available at X dose at Y interval. What was available was a one-time dose half of what we discussed (at this point two more hours of grin-and-bear it after we discussed it), then followed at the same interval by a different dose of a different oral medicine, the same one I had been taking at home that had stopped working any better than a tic-tac 48 hours ago. I’m exhausted. I’m fighting back tears and dry heaves – both unsuccessfully – I’m in so much pain. When I’m lovingly told to just “go ahead and cry” (which only makes it harder not to, on account of the kindness), I squeak back that “it’s not worth it because it only makes it hurt worse.” I take what’s available, get a light-but-something’s-better-than-nothing reprieve, and my nurse scurries off to track down my doctor and take care of business while I summon all the zen/happy place meditative skills I’ve got, bracing myself for a much-longer-than-anticipated night and an all to familiar, but exhausting and degrading fight.
In a grand stroke of cosmic mercy, my doctor was totally understanding and apologetic when my nurse got in touch with him, prescribed a “stat” order of what I actually needed so that pharmacy would send it up faster; wrote a second order so it would be available later as we had discussed, and explained that in his haste to enter my orders ASAP earlier, so they’d be available as soon as I could take them, he had gotten my orders confused with another patient’s when entering them (emphatically clarifying that he didn’t transpose them and give the other patient too much, just that he had done them quickly off the top of his head rather than waiting until he was finished rounding like he had everyone else’s). I was incredibly grateful not only that I was able to get what I needed without having to play “advocate” at such a late hour and on such fumes of energy, but also that it had been a simple mistake rather than a bigger issue, since he would be my doctor for the next several nights as well.
Minutes later, I was finally given what I needed, and got the relief I so desperately needed. Nothing was 100% better, mind you – the various accompanying aches and pains rarely ever go away completely anymore, and I’m used to it; it’s a white noise you ignore and forget about until someone points it out or asks you to pay attention to it. But I feel my body sink into the sheets and truly relax for the first time in almost two weeks, and I’m caught off guard by the wave of tears that comes over me; a mix of exhaustion, relief, and a surprising note of unusual tenderness and self-compassion, as what I’ve been going through – arguably putting myself through – for the last long while comes into involuntary focus. In that moment, it all melted together into an odd and unfamiliar apprehensive gratitude, for lack of a better phrase – appreciation of the various people and circumstances that render my journey with this disease comparatively easy, even when it’s not; an anxious, acute awareness of how reliant I am on both and how little control I have over either; and weary terror at the prospect of what lies ahead and my assessment of my own abilities and reserves to rise against it.
I’m quickly running out of fuel, and it’s not a matter of whether I want to keep going or not. I feel like I’m in the middle of nowhere with my “low fuel” light on, unsure if I’ll make it to the next station – or if there’s even one close enough to hope. As I drift off to sleep, I silently repeat to myself my stoic doctor’s uncharacteristically candid words from two years prior, having written them down after he left the room knowing I’d need them later: “every time the going really gets tough, you’ve been able to dig deep and keep going; in what I’ve seen, some people are able to do that and some aren’t, and I’ve never seen you fail to rise to the occasion, and I have no reason to think that you ever will.”
I get the deepest, most restful four hours of sleep I’ve had in weeks.
