Day Two in Jail – Torture Tests

Day 2 in Lock up, Lock down, Lock Sideways – it’s all a matter of perspective

I woke up on the wrong side of my plastic bed this morning. Reality smacked me with where I was and why I’m here. I can serve the “nickel” of the normal CF prison sentence. This stay has rattled my nerves and tested me. Escape plans fill my mind.

I swear I heard Fox partying in the hallway last night. I have never slept in a noisier hospital wing than the one I am in now. Loud talkers on a cell phone can’t match these people for volume. I miss the quiet floor I usually stay on.

Yesterday’s nurse princess transformed into a nasty, bossy four-foot troll who woke me up for blood pressure around dawn.  No sweet kisses on the forehead here to awaken me from my slumber. Just a nasty lady mustache atop grinning wart lips. 

Hospital communication breakdowns are my favorite. I give them a printed list of my meds but somehow they find a way to f**k it up. They cannot process the fact I take two nebs of hypertonic saline in the morning and two in the evening. They write down what they think it should be. READ THE LIST, people. I will be placing a special note on future lists: “Yo, it’s two, I repeat two HTS in the morning and two in the evening. That’s not a typo.”

Then there is the “surprise test of the day.” Today, I wasn’t supposed to eat breakfast, yet breakfast showed up. Luckily, I had treatments to do and didn’t eat it right away. The nurse stopped me in time. What if I had eaten it and couldn’t complete the tests? There’s another day in the hospital and another 10K all because of a three-dollar breakfast being delivered by accident.

It’s getting harder to hide CF from my managers at work. It was easier to do it years ago when I only went in once a year or every 18 months and I could depend on having a new boss every year. Now, it’s tightrope walking and juggling at the same time. It’s getting technically more difficult to hide the truth. I’m not sure how much longer I can do it. I want to work as long as I can, but CF is screwing with that plan.

Tests, tests, and more tests

My insurance company will look for ways to get rid of me after today. These doctors love tests. And they delivered big time with that love today.

First up was what I call the Survivor test. They injected radioactive Thallium into me, then strapped me to a table so I couldn’t move. Three large boxes circled me, taking images of my Labrador heart. It seems strange to say 20 minutes being immobilized feels like a long time, but it does and did. Holy crap. I have new respect for Survivor games where they have to stand on a stick for 6 hours. The tech made it a constant point to tell me not to move. I didn’t and couldn’t thanks to his strap-down job.  

From there I went for the poison dart frog venom test. In this one, they placed me on a table and the same guy who shot me up with radioactive material 30 minutes earlier, dosed me with what must have been poison. All of a sudden it felt like I had just chased Fox out of a downtown L.A. bar and down the block. My chest tightened and I couldn’t breathe. SOB. SOB. SOB. Alert. Alert. Dying here. Shoot the f’ing frog that humped me, damn it.

The techs acted like it was normal to feel like you just ate bad blowfish. FU. Normal this, dudes. The bad guy just poisoned me like James Bond in Casino Royale.  But I don’t have an Aston Martin with a drug kit in it. Why are you standing there? Give me the antidote. I’ll tell you what I did with the “Nurse, Nurse, Nurse” guy from last night. He’s duct taped to a gurney on the top floor of the parking garage. Antidote, please.

It’s no wonder I have a splitting headache tonight. It took me 10 minutes to come down off of that joy ride to heart stretching heaven.

From there, I enjoyed the Fast Pass to my 50-minute echo test.  The three guys working it were cool and Fox had some x-rated guy conversations with them, but it was still painful.

Lunch came after the tests, which was a cheeseburger and fries with three ketchups and no salt. I get the no salt part. I’m in the heart ward. But three ketchups for all of that food? Are you kidding me? Who do I kill?

I got to repeat the Survivor test after lunch. It was just as fun as the first time. Try it yourself sometime. Lie on your bed, with arms at your side, hand clasped over your groin, and don’t move. 20 minutes. Start now.

The rest of the day I worked, barely.  But I did eat more M&Ms in one sitting than I’ve ever eaten in my life. They’re monitoring my heart – WTF. Let it race.

Stay well.

Fox’s day in hell.

I thought it was a dude that woke Unknown for blood pressure. It was the lady stache that fooled me. I’ve woken up next to a few whiskers in my day, but this one was thick, black and greasy. I jumped on top of the TV and waited until she dragged her club foot out the door.

I partied hard last night with the nurses. Loud, lively honey babes charmed by moi. Bambi and Ginger helped me tape up the dude next door who couldn’t master the call button. We laughed our asses off to his duct taped, muffled “nurse” yelps. Press the button next time, dude. Press the button.

The docs punished Unknown for “chest pain” today with more chest pain. Whatever they shot into him is something I want a bottle of. That looked like 10 minutes of rollercoasting while drunk on Gin Ball Twisters fun to me. Gotta get me some of that stuff for tonight’s g-string martini “fiesta of love.”

Party like it’s your last.

Fox out.

Renaming My CF Drugs

It started with a puppy

Hello, Cystic Gal

When our then five-year-old daughter wanted to name our new lab puppy, we created a naming rule to weed out the names we couldn’t live with or inflict on the pup.

The naming rule: If we couldn’t stand at our front door and scream the name into the neighborhood without feeling embarrassed, the name was scratched.

Examples of names that didn’t make the cut: Cupcake! Creamsickle! Vanilla Latte! Banana Cream Pie! We laughed hard testing them, confirming to neighbors that we’re nutty, or least that I am.

Which brings me to CF drugs. Who names this stuff? Someone in Marketing obviously doesn’t understand what it’s like to take a medicine every day or every other month of your life. Or, at the very least, they don’t understand the psychology of the disease.

So, I’ve decided that a little renaming is in order.  Here we go.

Giving CF drug names some teeth
My wife once asked what drug I was doing and I answered, “I’m doing TOBI.” A small body shiver hit me as I realized how that might sound to the untrained ear. Not something I would want to yell from my front door.  Not to mention that our friend’s yellow lab was named Toby, and he couldn’t do much harm to bacteria.

We need drug names that sound tough. When I inhale or swallow a medicine, I expect it to go into my body and crush the last breath out of the bacteria. No more taking drugs with names created by nuns moonlighting as scientists. How about some muscle and weaponry?

Let the hellfire rain down on the cockroach Pa

Old name: TOBI. A name for a yellow lab.

New name: Armageddon Hellfire Mist. This drug name should be the equivalent of spraying RAID on a cockroach, then backing your monster truck over its carcass four or five times. If I’m going to invest 20 minutes twice a day breathing this stuff, I want it to be the end of existence for the cockroach known as Pseudomonas. I want this bacteria to face its worst nightmare – Armageddon – because this is a battle of good vs evil.

Old name: Colistin. A name a celebrity would give their kid.

New name: Lung-Jax. There’s no substitute for the scrubbing power of Ajax. I want my lungs shining like my sink and toilet do when my maid hasn’t been on a three-day bender of Mojitos and Manhattans. So shiny and new, the bacteria can see their reflection as they melt like the wicked witch in the Wizard of Oz.

Old name: Hypertonic Saline. This isn’t the worst name I’ve heard. I like the “hypertonic” part. Saline, not as much.

Love this stuff! Blast the mucus away

And Hyper-Sal? “I’m doing Hyper-Sal,” sounds like something a mafia wife might tell her friend over lunch.

New name: Hypertonic Jet Wash. Mythbusters placed an old school bus behind a 747 with its jet engines blasting. The “wash” from the engines blew the bus away like it was made of paper. That is what HJW does. Load up that old bus with bacteria and give them a ride they’ll never forget – right into a trash can on the wing of a paper towel.

Old name: Cayston. I want to tread lightly here because when I tested this drug I thought the nurse told me its name had a special meaning. Still, the name is a little too “prep school” for my taste. Let’s give Cayston a pet.

New name: CRR (Cayston’s Rabid Rottweiler) Unleash the attack dog with this drug. It chases down Pseudomonas aeruginosa and bites it in the ass.  “Oh, it’s just a doggy bite,” the bacterium says in its fake British accent, until the rabies start kicking in. No laughing then. And, no shot clinics in the lungs, either. Whose mouth is foaming now, bacteria scum.

Old name: Pulmozyme. I get it. The drug thins and loosens the mucus. Nice. I can work with that.

Clean-up hitter.

New name: Lobe Lube. This is like taking your 67 Mustang into Jiffy Lube for an oil change. Out with the crud, in with the new slippery oil.  Man, this baby purrs now. Not sure I’d take my new car here, but my beater, yes.

Old name: Xopenex: This sounds like something my crazy aunt calls her ex-husband when she’s pissed and lubed, which is most of the time.

Wedge those lungs open

New name: Crowbar. This has a double meaning. First, I want this drug to go in and wedge open my lungs, making way for the other drugs that follow.  Second, a crowbar is what my aunt used on her ex-husband to open his skull to the tune of 40 stitches when she caught him with Hyper-Sal’s wife. Good enough for her, good enough for me.

I’m feeling better already. Think of the marketing potential and packaging possibilities. Nice, huh?

Well, it’s time for me to go Crowbar my lungs open, flush them with a some Hypertonic Jet Wash, coat them with Lung Lube, then inhale a little Armageddon Hellfire Mist to kill the cockroaches that have been living large in my lungs.

I’ll get to the pills another day. I’m thinking Al Pacino in Scarface Say “Hello” to my little friends, Cipro and Z-Pack.


The Ultimate Cage Match? Fighting cystic fibrosis

Have you ever watched Ultimate Fighting?  It’s a simple concept: two fighters enter a caged ring and beat the living daylights out of each other until one of them is knocked out, gives up, or time runs out. It’s pretty brutal and blood is often spilled. I watch 30 seconds before I switch channels.

What strikes me about the cage match is how similar it feels to being boxed in or trapped by cystic fibrosis. Years ago, the cage was much larger and my opponent, cf, much weaker and inexperienced.  It was a mental game.  But my opponent has grown stronger and learned to punch and cheat and kick me in the groin.  The cage walls have moved closer together, too

Over the years, some great weapons have been tossed in the cage: TOBI, Pulmozyme, Hypertonic Saline, AZLI.  With them I have been able to give the hulking mass of bacteria a good beating.  Or, perhaps, at least moved it back to its corner to regain its strength.

But the cage feels tiny now and my opponent stronger and craftier.  The marks of two collapsed lungs scar my right chest, but most of the damage inflicted has been internal, though I’ve seen plenty of the blood.  And yet, I am so lucky, as it has hit others much harder and earlier in life.  But I still feel trapped by it, as it affects each decision and limits my choices in life. Just the stress it causes alone, is suffocating some days.

But I am lucky, very lucky.  I have my family, the CFF, my Twitter friends, my CF team, and  I know that soon another weapon will be thrown in the ring.  And better yet, one day someone will throw in the medieval battle mace of cf weapons.

With my spiked weapon in hand, I am going to beat the living shit out of this terrible disease for all the lives it has taken and the suffering it has caused. And then I’m going to beat it some more.  No horror movie ending here where the bad guy gets up again and again.  I’ll make sure of that.

Then I’m going to open the cage door and walk out, bloodied but still standing, the enemy defeated. What a day that will be.