Category Archives: cystic fibrosis

Kicked to the canvas today

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I’m not sure what hit me today, but I got punched hard.

I was feeling well early in the day. I did 30 minutes of light exercise bike during a conference call. Then, I made and ate my lunch. Then everything came crashing down fast. First, I felt like my eyes and were tearing and burning. It felt like an allergic reaction, but I’d taken my Alavert. Felt a little like I couldn’t breathe and was very sleepy and nauseous. My stomach was bloated, too, and I felt like I had to bring air up. Had some trouble swallowing. Then the anxiety kicked in thinking that my lung may have collapsed again, which I haven’t completely ruled out.

Took some xanax, which helped, but 7 hours later I feel like I’ve just reached my knees at best. Still feel like my stomach isn’t right. I have to admit in these moments I feel like giving up. The only thing I did differently today was take my zithromax at lunch instead of dinner. Maybe I had a reaction to that? Could the light lunch have allowed the zithromax to react differently in my stomach? Hard to say. Will call doctor tomorrow if not better.

Apologies for the post tonight. Better one coming tomorrow, I hope.

Monday Musings – Five Qualities I look for in a Nurse

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I am a big fan of nurses. Without them I might as well jump out of the hospital window. They are the wonderful people who drive my recovery. I cannot imagine a hospital without them, especially the caring majority I’ve met.

Filling up I.V. meds or jars of moonshine?

There are some specific qualities that I look for in a nurse.  Here are the top five. Note: For the purposes of this post, I will refer to nurses as “she.” There are some great males nurse out there, too, though the one I had recently may of been dipping into the red wall bins for a quick joy ride to “used meds” nirvana – would a skull and cross bones on those boxes discourage double dipping? Something tells me “no.”

Here we go:

  1. The nurse is healthier than I am. If she walks in hacking and coughing I want permission to open a trap door in the floor and drop her to the bowels of the hospital. If I hear her lie “it’s just allergies” when she looks white as a ghost, there will be a problem.
  2. She went to nursing college in the States, not Grenada or Tahiti or the Republic of the Internet.  All right, I might flex here and say major countries like England and Germany and Canada.  Let’s make a rule that if flip flops were acceptable footwear at your nursing school, you can’t be my nurse.

  3. Study or party? Photo by melalouise, Creative Commons

    She can insert an I.V. the first time. Have you ever been to the ER?  Nurses there start an I.V. quickly and on the first try. Why do some nurses treat the insertion like they’re buying a house? How many locations can there be to stick me? Look for the bulging veins. Start there. When you’re on your third try don’t tap on my arm to find a vein. That must be an F’ing magic trick only you know how to do because when I tap on my arm all I get are red spots.

  4. She’s not drunk. I may be fascinated by the woman who likes to tie one on to the point of slurring – who do you think appears in those homemade videos on the Internet? But when it comes to taking care of me and making sure you’re hanging the correct meds while I’m dreaming of crushing CF with my steel-toed boots, leave the champagne in your car corked, please. Some doctors might think it’s cute when you’re a little over the edge at the holiday party and may want to marry you one day, but I’m trying to remain alive during my stay.
  5. She’s over 25 and under 70. Do I need to explain this one? I don’t want to be your first patient or your last.

    Do you feel lucky, punk? Do you? Photo by Rivertay Creative Commons License

    This doesn’t apply if you’re super smart and graduated at 19 or if you’re over 70 and can actually pass your driver’s eye test without memorizing the chart. Also, regardless of age, I don’t want you to be super hot. Surprised? I’m cooped up for a week in a walk-in closet. The last thing I need to be thinking about is doing something I’ll need a divorce lawyer for when I get out. Eliminate my temptation and skip the blue eye shadow.

  6. Bonus: She skips rather than walks into my room. I want a happy nurse. I want an entourage of small animals to follow her into my room. Skip on in, Mrs. Happy and gang, nice to see you. One rule: This can only happen after I’m fully awake. If I see a squirrel looking over the edge of the bed at seven in the morning I’m going to cap him with the .357 I keep under my pillow for protection from the crazies roaming the halls at night. You may, however, kiss me goodnight on the forehead each night and skip on out the door, leaving a trail of berries as you go.

Best of health to you and the nurses who take good care of us. They’re the best, except the ones who can’t work the IV machines. They need to be banished.

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CF, Do You Hear Them?

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[This post is best read with heart-pounding rock n roll playing]

Yum, but every day?

Without my wife, I’d be somewhere in downtown L.A. pushing a shopping cart, I.V. pole secured by a couple of old belts, loyal dog at my side. The Wandering Cystic would be my name and I’d be . . . S-O-L. My daughter, hair “unbrushed” for the last year, would eat creamed corn from a rusty can.

Today, I thank my wife for being a great mother, a partner in fighting cystic fibrosis, and the magician who brushes our daughter’s hair. Love, baby, love.

Let’s not overlook the wife – or girlfriend – and the mother and their importance and bravery in the fight against this menacing disease.

We’re talking about strong women who have answered the call with “There is nothing in life you can burden me with that I cannot handle – Nothing.” They are the hero of the movie who, when knocked to the dirt, gets up again, wipes away the blood, and asks, “Is that it? Is that your best punch?” as they crack their necks and go to town on the villain. And,unlike guys, they clean up the mess when they’re done.

They are inspiration; they are strength; they are the baddest cats on the planet and you’d best not mess with them, CF.

When I stand in the Colosseum staring at the hulking form of cystic fibrosis retreating, thinking I scared it away, it will be no surprise that it’s really afraid of my wife, chainsaw in hand, standing next to me. And next to her a mother in Texas, with a wound that won’t heal, waiting to unload a cannon of hurt; and next to them, mothers with CF and mothers with CF children ready to take a shot. The line is long, my friends. The line is really long.

Your day is coming, cystic fibrosis. Your day is coming. Do you hear them, CF? – these strong women.  They are going make sure your beating comes sooner rather than later. And this time there won’t be anything left to clean up.

Happy Mother’s Day.

xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo

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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Eats, shoots and leaves – 140 character limit on Twitter

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I enjoy Twitter most days. Not all, but most.

The challenge is sending comments into the void and not knowing their impact.

I’ve taken a “if I like it and think the tweet is funny, I’m sending it” attitude. Certain times I have laughed by rear end off writing a tweet only to have it bomb and get no response back, which is the case most of the time.

Here’s my favorite tweet that bombed because I messed up the meaning.

@cffatboy in the hospital is like keeping a wolverine in your bathroom. At some point, U R going to have go in there & it won’t be pleasant.

I wish I had written:

@cffatboy in the hospital is like keeping an angry wolverine trapped in the bathroom. At some point, someone is going to have to go in there and lose an essential body part.

I would have violated the 140 character limit. Oh, well. I feel better now that I got it out of my system. I thank CF Fatboy for his guest post, which made me laugh so hard it helped clear out my lungs.

And though I blow off steam on Twitter, I truly appreciate the people, CF Fatboy especially, who I have met and learned more about. That part of Twitter is special and I value it above all else.

Tweet on, my friends, tweet on.

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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/