Tag Archives: cystic fibrosis

Let’s Have Some Fun Living Friday – The Unknown Comic

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Rights unknown

My friend @onlyz told me today to stop talking about dying because there was living to do. He never pulls punches in his “140 characters or less” tweets. But he is correct – there is living to do.

Tonight, I celebrate life and the inspiration for my blog identity, Mr. Murray Langston, aka, The Unknown Comic, who has delivered loads of laughs and happiness to others. I loved watching him on The Gong Show. And I respect, honor and parody him here on this blog.

Here’s a link to his Wikipedia bio: http://en.wikipedia.org/wiki/The_Unknown_Comic

If you read the bio, you’ll notice the last line: “He is active in charity work, particularly for children’s advocacy causes.” How nice is that. I wonder if one of those charities is cystic fibrosis?

Here are two youtube.com videos of The Unknown Comic:

http://www.youtube.com/watch?v=Xj3Q9l9Ivng

http://www.youtube.com/watch?v=_zrORaRB5S4

Enjoy and have a fantastic weekend. I’ll do my best to live as much as possible. Thanks for the redirection, @onlyz.

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A New Weapon Arrives – fear.less Magazine

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Two subjects I think about a lot are cystic fibrosis and fear.

You had me at fear.less

I know the exact point CF became a disease of fear for me. That story is sitting in my blog’s “drafts” folder. I haven’t been able to finish it.

Before that tipping point in my life, I faced down this disease with the bold confidence of youth. After that moment was a life fearing what I had to lose.

So, it was with jaw hanging open that I started reading a new online magazine called fear.less. To quote Rene Zellweger in Jerry Maguire, “you had me at ‘Hello,”” which for me was the title.

A magazine about facing fear head on? How many CF warriors and warrior parents can you see in their upcoming pages? I plan on emailing fear.less with a few suggestions.

Here’s the link,  http://fearlessstories.com/.  Tonight, I applaud the fear.less creators for telling the stories of people who have “miles to go before they sleep.” I can’t wait to add their stories to the CF stories I read every day.

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Renaming My CF Drugs

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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.

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Monday Musings: The Right Stuff?

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[Note: This blog contains the rantings of a madman. Following any actions in this post or others will definitely damage your health, if not kill you. In other words, do not attempt anything discussed here, please. All medical decisions are best made with medical professionals who haven’t lost there minds after years of battling CF.]

Pilots, Astronauts, and Pushing the Envelope

I love the movie The Right Stuff. What’s not to love about the coolest guys ever flying jets beyond the speed of sound and riding rockets into space. Heroes, all of them.

What kind of courage would it take to do something like that? To risk everything – your life and any love and happiness you might have known – to fulfill a dream unlike any other. And then to repeat it in test flight after test flight with the odds increasingly against you?

Who would you have to be to do that? Man or woman? It doesn’t matter. Who?

Now, a hypothetical question. Let’s say you have cystic fibrosis in the moderate stage, four hospitalizations a year, hemoptysis, and you’re trying to hold on to what you have. But you know your luck can’t last forever. You experience a slight downturn in your PFTs and wonder if you have any tricks left.

Photo: jurvetson creativecommons.org/licenses

And you understand you’re potentially one day away from an infection that might put you down hard or move you to the severe stage – getting CF’s painful backhand across the face, your head turning in slow motion, teeth and blood flying as you drop to your knees – not enough to kill you, just make you suffer more than you’ve ever suffered before.

New medications are years, a half dozen trial stages, and a mile of red tape away. But there is something else, a rocketship parked in the desert with your name on it. A way to bypass the delays. Do you get in and risk it?

Again, hypothtically, what if a chemical existed that might provide breakthrough results right now?

But there’s a catch – there is always a catch.

  • The chemical is hard to get. You can’t drive to your local vitamin store, buy a bottle and start ingesting it like a pill-popping madman. No, there are hoops you have to jump through and white lies to tell before you get it.
  • You have to apply it to your skin and there is no set of instructions how to do this or what mixing agent works best. Take your pick.
  • There are no dosing instructions. There is advice from some braver test pilots, but that’s it – no Tylenol box with the maximum dosage for a 12 or 24-hour period. You can go crazy and bathe in it if you like. No rules here. You control the throttle.
  • Unlike experimental trials or any trial, this is mostly hypothesis with a few test flights.  No real laboratory results or longterm safety testing. It’s you, the test plane, and miles and miles of blue sky. Will you be able to reach the eject handle while cartwheeling out of control?

With these obstacles in mind, what would you do? Would you place the compound on your skin like a nicotine patch? No idea how your inner chemistry will react?  Would you risk everything?

Do you have the right stuff? Is it the right stuff?

I look up at the stars as I would any other night. But this time I hear a noise in the distance echoing off the canyon walls and desert floor, breaking the silence . . . 10 . . . 9 . . . 8 . . . 7 . . . 6 . . .

Helmet tucked against my body, I walk toward it one step at a time.

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Ex-Celebrities, Anger, Perfect Genes, and Feeling Neutered by CF

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Photo courtesy of NASA

I was at my nephew’s little league game yesterday. Perfect day. But I was feeling a little off.

An ex-celebrity coached the opposing team. He was being a d**k and overly competitive and it bothered me.

I don’t think of myself as an angry person, but down deep there’s a ball of rage that bubbles to the surface for special occasions. And it’s not easy to control.

Here was this ex-celeb, the picture of perfect genes, tall, model good looks, who once kissed some of the top leading ladies in Hollywood, with his ex-celebrity wife, herself of perfect genes, making a fool of himself. Perhaps, it was jealously pure and simple that threatened to unleash my little sun of rage.

I wanted to confront this guy and get in a fight, or at least join the fray.

I wanted some magic CF power, almost Vulcan-like, to grab both sides of his face, hard, and show him how lucky he was to be who he is and have what he has. And to show him how infinitesimal in the scope of life a missed little league call is. A punch to the face would have felt good, too, followed by one to his stomach.

Had that happened, hemoptysis would have been everywhere, scaring the children and their parents. Imagine the mass chaos on the field with parents pouring from the stands to get their children out of harm’s way – the crazy celeb-hater spewing blood on the manicured sand and grass.

Cut to the last image of me on my knees on the pitcher’s mound alone with the invisible disease exposed and a Rorschach of blood in front of me.

Perhaps that is why I hate CF so much – the feeling of being a neutered male, different from the rest of the herd, a mutant. Or that CF has kept me from reaching my full potential as a man. Yes, I feel lucky to be here, to have lived this long. But some days it’s just not enough. I want to be normal, to stare at the face of another man, nose to nose, and have the other guy back down.

I want to be the one with perfectly formed bones, square jaw and cool hair.

Without the CF, would my anger still be there? Or, is CF the only thing that has kept me out of prison all of these years? I’m not sure. But I’d like to find out.

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The Power of Two – Coming Soon

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The Power of Two - Coming Soon

Check out this new documentary

I just watched an excellent trailer for a new documentary coming soon.

It’s called The Power of Two and its subject matter includes cystic fibrosis, different cultures, and my favorite subject of overcoming great odds in life.

I won’t say anything else other than the trailer hooked me. I’ll get my popcorn ready.

Here’s the link: http://www.thepoweroftwomovie.com/

10 things I don’t want to hear from my PICC line nurse

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I’m going through man-a-pause. No, that’s not on the list, but it should be.

It was all I could do today to keep from using ALL CAPS in my tweets. The number of tweets I didn’t send was higher than the number I sent. I told CF-mum Lorraine I dug her. I started three blog posts and stopped. Strange day.

I also listened to Captain and Tennille’s Love Will Keep Us Together and enjoyed it.

So, when in doubt, go with frivolity and horseplay.

10 things I don’t want to hear from my PICC line Nurse:

  1. Where did those buff arms go?
  2. Hellooooooooooooo, to my first solo insertion.
  3. Neck or groin? Tongue depressor or leather strap?
  4. Nursing school in Tahiti rocked, dude!
  5. Rambo never asked for a shot of lidocaine, dear. And he had to stitch his own arm.
  6. Does Red Bull ever make your hands shake like this?
  7. Do I feel warm to you?
  8. Mind if my lover, Bart, watches?
  9. It’s okay, 5-second rule in effect for dropped needles.
  10. Cystic fi-what? That can’t be good.
  11. (bonus) Holy crap! It is sticking out of your ear and I just . . . threw up in my mask.

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Monday Musings: Malcolm Gladwell, rapid cognition and CF

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In his book Blink, Malcolm Gladwell explains the importance of thin slicing or rapid cognition in decision making. He states that these terms are not “gut instinct,” but rather an educated decision made quickly based on the conscious and unconscious minds. And, rapid cognition is usually more trustworthy when making decisions than an analyzed decision made over time.

What’s interesting is how Blink applies to battling cystic fibrosis.

One of my favorite books by one of my favorite authors.

What facts do we really have to go on with CF? We have our interpretation of the facts and others’ interpretation. Apologies to Mr. Gladwell, who can call it what he wants, but we need our CF “gut instinct” to help us make decisions.

Example: On cysticfibrosis.com last night, a mother of a CF child asked about the order of meds her clinic was recommending. I replied with my order and logic. A man replied with the opposite order. Who am I to tell him that pulmozyme before HTS doesn’t work as well as HTS before pulmozyme? He says it works best that way for him. Who is correct?

Or, jokingly, who is more correct?

We are given some tools (meds) by doctors with some guidance, and we choose some of our own, such as supplements. Many times, it’s up to us to determine which tools to apply and how to apply them based on our research, our experience and our gut.

The mother was questioning the clinic’s decision because her experience, or gut instinct, told her their decision was incorrect and less effective.

Now guess which group of professionals “thin slices” daily. They’re highlighted in the book – doctors.

Doctors need to make fast decisions. They interpret the evidence and what it tells them, then go with it, rarely second guessing. Bang. That’s it, patient diagnosed. Move on.

Have you ever experienced the moment with your CF doctor when you’re trying to decide whether you need to be admitted or not?  The decision is borderline, hovering, waiting to be made. Some signs point one way, some the other.

What tips the scale one direction or the other?

You sit there thinking, processing, clock ticking, looking at your doctor. Who blinks first? Your gut, or your doctor’s?

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Fox pays me a visit

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The Trickster

Last night, Fox came to visit.

Fox: Why are you sleeping?

Me: I’m not.

Fox: Your PFTs went down.

Me: I know. I was there.

Fox: What are you going to do about it?

Me: Cry like a baby.

Fox: This could be the beginning of a bad trend.

Me: Crying or falling? What can I do?

Fox: You’ve fallen before. Get back on the bike, literally.

Me: I’ll bleed.

Fox: There’s always a trade off.

Fox left.

I sat in the dark, thickheaded, and pondered what the annoying trickster had said.

Do I have any tricks left of my own?

The clock is ticking.

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Post Battle Blues – Please add to the list

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Post not sponsored by Old Milwaukee (though it should be based on my consumption of their product the last three days)

[CF Fatboy’s guest post is in the comment section. Watch out, it burns.]

Feeling tired today from the battle with @cysticgal. It could just be the cipro, day 7, or the Old Milwaukee, bottle 7.

I wish we had added number 11 to the blog throwdown:

11) Describe the perfect hospital stay.

My first answer would be: Not going at all. But considering I’ve been going every four months, here’s my answer for today.

I want everyone to line up in the hallway when I arrive, Nurses, Doctors, techs, RTs. Stand in the hall and greet His Highness, please.

My antibiotics need to be ready to go the minute I arrive, no waiting four hours for the first dose.

The PICC line nurse needs to be waiting in my room and gowned up. No more temporary peripheral IV sites. I’m tired of the 24-hour IV site in the fatty part of my forearm that takes every o.z. of my inner reserve not to cry out like Mel Gibson at the end of Braveheart: FREEDOM . . . . . S**T, THAT HURTS.

I want a workstation. No more putting the laptop on the bed and pulling the chair up to it. Think Marriott.

I want a massage every day. You truly want me to feel better? Massage is the Disney Fastpass to good health and Heaven, my friend. Heaven. I’ll cough up mucus from 1969 if you do this for me.

No RTs. That’s right. Unless I can’t move my arms, give me all of the meds I need and come back in 14 days. I can do it myself, LIKE I DO EVERYDAY OF MY LIFE. Most of the RTs I know should be wearing brown UPS outfits because their only job is to deliver stuff.

So, what do you think?  What did I miss? Feel free to add some of your own in the comments section. It’s interactive today cause I’m feeling lazy and I have have to go wash the Bird (that’s guy code for Tran-Am).  🙂