Saturday Funhouse: Rejected CF Therapy Ideas

I Stumbled Upon a confidential CF Foundation file today. It contains ideas for potential cystic fibrosis therapies that were rejected or failed in testing. Here are a few from the dozens listed. [Warning: Adult Content, perhaps.]

Good in chocolate, too.

Tabasco Flavored Albuterol. According to the document, the heat of red peppers causes coughing, making secretions fly out. This product only reached Phase 1 testing, which lasted about 30 seconds when “volunteers started collapsing from the pain of the Tabasco” in their lungs. “Sounded great on paper,” one researcher wrote. Though the medicine was cancelled, researchers discovered it still worked great on scrambled eggs and burgers.

Cat, cat, cat, cat, cat

Jogger’s Portable Compressor. This product made it to phase-two testing. The concept was simple and designed for CFers who like to jog. A battery operated compressor in a backpack was strapped to a dog, allowing the jogger to do treatments while running. It worked out just fine in early testing until Rocket, a two-year old black lab, spotted a cat. Unfortunately, the jogger lost eight front teeth, quite painfully, the report adds, “when the nebulizer followed the dog across the lawn.” Product cancelled; dentist visited.

Add one LC Plus and you're good to go

Beer helmet and nebulizer holder. It gets tiring holding a nebulizer in your hand or teeth for hours each day. Plus it’s not easy to drink your favorite beer and type inane posts all at the same time. The answer: combine the tasks. Adding a nebulizer holder to a beer helmet allows users to inhale one drug, then take a swig of their favorite beverage – all hands free. The product was cancelled when drunk subjects nebulized beer and drank TOBI.

Don't miss

Spit the bullseye. This game-like therapy was designed to give patients incentive to cough up their secretions and spit them at a target five feet away. Points were awarded based on the accuracy of the shot. Several problems occurred during testing. First, not everyone is good at spitting. Second, it was a really unpleasant clean up job getting the junk off the wall, not to mention the carpet, furniture and curious pets. And Home Depot doesn’t make paints designed for CF. This failure killed plans for the spinning target in development.

How do I disinfect this?

Bong-shaped Nebulizers. Here’s the failed advertising copy: It’s hard to look cool when your friends come over and you have inhaled meds to do. Introducing the nebulizer that looks like a bong. Now instead of feeling uncomfortable with a PARI LC Plus hanging from your mouth, your friends will marvel at your amazing ability to smoke weed continuously for an hour or more at a time. Who’s the Ganja King or Queen now, pal? Share a hit with them. Then wait until they get that albuterol buzz going, complaining that they feel wound up not down. “Who sold you this crap,” they’ll ask. Smile and say, “this is pharmacy grade stuff, man. Pass the chips, I’m starving.”

Stay well.

Letter to my daughter – 5/21/10

My dad wears a bag over his head. What does your dad do?

I’m frustrated with this blog today.  Perhaps, I should say lately. And, I’m not sure why. It’s just bothering me. If it were a piece of paper, I’d burn it.

CF may be talking this week. I don’t feel so hot. As my mood goes, so goes my blogging. But I think it’s more than that.

I guess when you try anything new, it will always take an unpredictable path. I’m not sure what I expected other than a place to leave a record for you when you’re older. You’ll be able to say to your friends, “see, this is why I’m so screwed up. Look at the nut job I had for a dad. I’m swimming against the genetic tide here, people.”

I agree with that. I’m not sure how many other dads are sitting around sucking a nebulizer bong everyday. I guess one could look at it that way. Though I read a lot of stories about special people coming from challenging situations. And I wonder how having a dad who spends a lot of time in the hospital will shape you. I’m not sure it’s a bad thing, though you may disagree. It may be a character builder. Or not. You could just spend your life whining like I did.

But something tells me that you’ll avoid that path. That’s my gut. You’re smarter. You’re stronger. Though, I do feel sorry for your future mate, as clearly you’ll be the boss and get your way. Good for you.

Back to the blog. I think the stat meter is bothering me. When I first started the blog, no one read what I wrote. It was nice. I could write anything. It didn’t matter. Now I have a few good people I care about tuning in. When I sit down to write, I’m thinking more about what others may want to read. I feel like I have to keep that stat meter high. I can see what posts are popular; I like the comments. I feel like I’m editing a lot of posts that I’d normally publish but censor now because I’m not sure the blog audience would like them. Or, in most cases, they’d be horrified.

What to do?  That is the question I am asking tonight. I can’t answer it yet. I do think I need to make sure my goals are clear as to why I’m doing this. That will help. I can say that this blog is not really for you as much as I thought. It’s for me, too. Now I just need to decide what I want. I feel a shift coming on. It will be interesting to see what that is.

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The Language of CF – Battle Stations

I read a fantastic blog essay by Tiffany Christensen, aka Sick Girl Speaks. She discusses the use of the “battle metaphor” with cystic fibrosis and whether it’s time to drop it. I recommend reading her point of view. You can find it by Googling “Sick Girl Speaks blog.”

I hesitate to place the link here because I use the language of battling and fighting all the time. I’ve even personified CF into a hulking form that I drag behind a yacht, or chop into pieces or simply beat up. So, with respect to the author possibly not wanting a link on my site, I give you the information you need to find her excellent post.

I do, however, want to discuss my viewpoint on the language of war and battle with CF. Not to debate Ms. Christensen, as there is no right or wrong here. For me, it’s a “Whatever gets you through the night” situation. “War” and “battle” against my enemy, CF, get me through the night and day better than any other weapon I have.

Over the course of my life, I have compared fighting CF to that of fighting a great war. It has served me quite well and I can say that without it, I would probably not be here now. I would not have had the strength to make it through some close calls or, more importantly, the day-to-day routine of treatments, especially that f’ing flutter, which is a daily battle of its own, my face red, curse words attacking and insulting CF and telling it to leave my lungs.

The battle analogy, or metaphor, depending on your definition, allows me to generate a higher level of anger that manifests itself in added power to blow into that flutter for 30 minutes, or cough harder to get the junk out three times a day, every day. Anger is an important element of battle, too. And, there is science to support it. Weight lifters and some athletes use anger for added strength when lifting; and testing shows anger does generate additional power. Many sports teams, especially football, use the language of war for motivation to win the championship.

Anger and battle go hand in hand for me and if I can direct these at CF and the bacteria in my lungs, all the better. I believe it has made a difference in my ability to fend off this disease. I believe a positive attitude helps, too. And yet, I don’t mind anyone who doesn’t believe this, as it’s all about personal choices. I’m not the guy who is going to beg the jumper to back away from the ledge. That’s their decision to jump, not mine.

Yes, war implies one side loses, but it is CF that is losing right now in my world, not me. I am winning. I am maintaining lung function. But I am lucky, too. My defective genes gave me an advantage many others with this disease have not had. And, many may have “lost their battle to CF,” but I don’t look at them as having lost anything. I look at them as great fighters and heroes who fought an impossible war, but battled anyway. And yes, despite having a positive attitude and fighting, sometimes there is nothing one can do to prevent the inevitable with CF. The question is whether not having a positive attitude and a fighting spirit shortens a lifespan. I can tell you that it would have in my case.

When you’re in a war or battle, you are alert. There is danger. And if you let your guard down, bad things happen. It’s the same with CF. What would happen if I skipped a treatment or two? In this blog, I’ve transferred my anger to the page and felt a renewed energy to fight CF – a renewed confidence that there is hope that this fight will end one day in the death of CF. Some days, it just helps to lob “prose grenades,” whether humorous or sarcastic, at a clearly defined enemy that is causing me so much trouble.

I truly thank Ms. Christensen for her thought-provoking post. She has elevated the level of discourse about this disease. Truly, I believe she is stronger than I, knowing that I probably could not withstand two lung transplants as she has. That is mental and physical toughness of a higher level. I need the talk of the battle to get me through the night. Obviously, she has something else that drives her. And I applaud her for sharing that with us.

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Not So Deep Thought of the Day – Who Burned the Chicken?

I mentioned in a recent post that I love the concept of fear.less Magazine.

Scary

I started laughing today because it hit me that I will never make the electronic pages of fear.less. Never because I fear everything. Everything infinity. I win.

In fact, I started making a list of my fears for this post and had to stop because I started getting scared. I reached for my little fear-killer, Xanax, to calm my frayed nerves. Then @cysticgal tweeted me to let me know that I’d once again managed to included women and alcohol in a post. I felt better and strangely proud because, yes, I can write about subjects I know nothing about.

So, today I decided to start my own anti-fear.less magazine called fear.ful Magazine.

For about five minutes I thought it was a good idea. I even started drafting ideas for it, a table of contents and the cover art.

Here’s my idea for the fear.ful cover:

I’m standing on the roof of a two-story hospital, which is scarier than a 10 or 15-story hospital because I might survive the fall. I’m dressed in a burning chicken suit surrounded by door handles, chest tubes, split infinitives and respiratory therapists – a scary face is painted on the paper bag over my chicken head. An angry doctor is ready to push me off the edge. No need to cast an actor for that role, as I can pull a few from my past to give me a bump. A dozen Cirque du Soleil clowns wait below to catch me with a large paper net doused in gasoline.

All of that sounded great until I became afraid fear.ful would be a huge fail.ure. I’d lose my money, get sued by lawyers and end up in an alley nebulizing rat.

So, I popped another fear killer, kicked back and read some Charles Bukowski, avoiding sleep, fearful of the nightmares that would come from writing this post.

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Why I Love Visiting the Emergency Room

[Disclaimer: Adult content. Do not attempt anything mentioned here. You’ll only get arrested,]

Do you have a reservation, sir?

I almost had to visit the ER visit last week due to stomach problems. I hate going to the ER so much, I gutted it out, pun intended.

Here are my favorite things about the ER:

I’m really here to rob you. I must be the only one who enters with a mask on. That’s the look I get from admissions, to the nurse who takes my vitals, to the first doctor I see two hours later. And to tell you the truth, I’ve never see anyone else show up with a mask on. No wonder they’re afraid of me. “Everyone raise your hands. This is a robbery. Toss your pulseox, heart monitor, and X-ray machine on this dolly. I can do all of this at home, people.”

Not like it was years ago, honey.

For VIP service. Look, let’s face it, the ER isn’t the Brown Derby. There’s no tipping the nurses to get served faster. But there are a couple of methods to reduce your exile in waiting room hell. First, always mention your chest and heart. I don’t care if you only broke your toe, say: “I’m having chest pains and can’t breathe. Oh, and by the way, could you X-ray this swollen toe while I’m here?” Second, if you’re coughing up blood, don’t be shy about it. Either bring a white towel with CSI blood evidence all over it or let a good cough splatter hit your shirt like you’re a drunk. They’ll take you right to your table. Don’t forget to tip.

CF is slang for Genetic Lotto Winner. Oh, how I love to hear, “you’re really lucky” referring to how long I’ve lived with CF. Yeah, I’d agree with you most days, but I’m not feeling so lucky right now with this collapsed lung and upcoming week “tubed” to a plastic suction box. Or, I’m not really connecting coughing up blood and luck, doc? Does the first person tonight with hemoptysis win a chicken dinner or something?” Then I’d feel lucky. Winner, winner, chicken dinner.

Appearing at Midnight, the Unknown Cystic

There’s a reason they put walls around toilets. Lying on a gurney for four hours in the hallway with staff members discussing my medical history is the equivalent of sitting on a toilet taking a dump in the middle of a mall – the same number of people walk by staring at you. That’s how much I hate the lack of privacy. “Where’s the damn toilet paper? Hey, you, buddy, standing by Victoria’s Secret. Toss me that catalog.” Welcome to my nightmare.

Shake this. I’m wearing a mask. I have cystic fibrosis. And you want to shake my hand, doctor? Please, why don’t you just let me lick your palm like your black lab does after you’ve eaten a slab of BBQ ribs. Better yet, after you’ve wiped it on every other patient and the floor. Just for kicks, how about giving me something I didn’t come in for – like the “hoof and ass” rash the guy in stall four has. In a fake British accent, Thank you, sir, may I have another, please.

What happens in the ER . . .

We’re on Las Vegas time. Just like Vegas casinos, time doesn’t exist in an ER. Gamble as long you like. In fact, ERs could learn something from Vegas. First, cocktail waitresses with real cocktails would be great. And blackjack tables would be a nice time-killer. For once I wouldn’t mind the two-hour minimum to see a doctor. I’d say, “not right now, doc, I’m down five hundred and Dealer Mikey here just gave me a colonoscopy when he drew a blackjack to my 20. On your way out, doc, let Nurse Ratched know I need another Martini. Shaken, not stirred. Thanks, doc.”

Be well.

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Monday Musings – School, Dreams and a New CF Narrative

I applaud@cffatboy’s recent college graduation. Three cheers for his hard work and dedication. No one will ever steal that accomplishment from him, except old age when he’s 101.

I watched many movies here

His journey reminded me of when I graduated college at age 32.

I had experienced a difficult time in high school because I lacked guidance, was foolish, and CF had taken its toll on me mentally. I didn’t think I’d need a degree.

Why put the effort forth when you are going to die? CF told me.

Partying and having fun sounded better, though I did those poorly, too.

One day, walking to a movie in Westwood Village – I spent my time in movies escaping – a story on the cover of USA Today jolted me hard. It stated that the CF gene had been discovered and a cure was possible.

Now had this been a movie, zoom to a close-up of my stunned face, sound effects like car brakes screeching and the camera panning around me quickly, 360-degree style, as my world spun out of control.

That simple newspaper story redirected the missile that was my life.

Can't thank USA Today enough

For the first time, I believed there was hope and that my thesis about CF killing me might be flawed. It was a revelation in an “oops, what have I been doing with my life” kind of way. I earned my college degree because of that life-changing moment and started believing in the future.

The role school plays in my narrative and the narrative of having cystic fibrosis is interesting to think about. My mother decided she would help me live to graduate high school. I became determined to graduate college. And my current goal is to live to see my daughter graduate high school.

Great work CFF!

I’m not foolish enough today to think my story is unique. How many of us now living with CF learned at a young age from a doctor that we wouldn’t be here today. That is the old narrative of cystic fibrosis for many now. Thousands of volunteers, parents, CFers, the CF Foundation, and the Internet came together to defy and change it, to elevate the average life span to 37 years.

So, my friends, my question today is: If a new CF narrative exists, what is it? And, drum roll, will it be as wrong as the one the doctors told years ago?

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@onlyz’s Fun Friday – Five Fun Pranks To Play at the Hospital

[Disclaimer: Each of these pranks has the potential to go drastically wrong and harm people, including you. Please remember that this an entertainment site and it is strongly recommended that you do not follow anything that is written or said here.  You may end up in a car trunk with hospital workers debating how they’re going to chop you up. It could happen. Don’t say you weren’t warned when you’re searching around in the dark for crowbar to defend yourself.]

[Disclaimer #2: THIS POST IS VERY ADULT, or childish, and you should skip it if this isn’t your cup of tea. So, perhaps, you may want to return to something not written by an insane person who is tired of quarterly hospital stays.]

Prank You Very Much

Ah, there’s nothing like 30 or more hospital stays to bring out the humor. So, today on @onlyz’s Fun Friday, I celebrate that joy and happiness with five fun pranks to play while enjoying your vacation at the hospital.

This can't be good

  1. What does the color of your sputum say about you? This is an easy one to start your life of hospital pranks. You’ll need an extra sputum jar. Take some food coloring and put a little in your next sputum sample. You’ll have the nurse looking at it like an engagement ring from a rock star as she walks headfirst into the door.
  2. Privacy Please. When you absolutely need to be left alone for that conference call or quiet moment with your spouse, putting a “Do Not Disturb” sign on the door is about as effective as inserting your own PICC line. Here’s a sign that will make anyone check their courage meter before coming in: If the van’s a rocking, don’t come knocking – massage therapy session in progress. For added authenticity and  confusion, print it on paper with the hospital logo.

    Hello? Anyone there?

  3. Big Brother Is Watching. Place a fake security camera in your room (available on eBay). When someone notices, and they will notice, say “yeah, I thought it was strange when they installed it. Who do you think is watching?” Then stand up and pretend to look in it, making crazy faces and acting like a monkey. Finish by mooning the camera. “Let them tape that bitchin’ backside,” you say laughing.
  4. Pump yourself up for the big game. Sometimes its hard to take the sixth blood draw from the guy whose piece of fruit in phlebotomy class couldn’t scream every time he stuck it with a practice draw.  My suggestion: have a football helmet next to your bed and every time someone comes to stick you, put in on, do a motivational pump me up dance and cheer: “I’m ready – BRING IT ON!” For extra effect, spike a football after they’re done.

    Have you been a bad boy in the hospital?

  5. I hearted stewardesses. Nothing says party and drunken flight attendants like empty mini-bar alcohol bottles lying around. You won’t believe the doctor’s face when he sees the bottles, United Airlines flight attendant blazer, lacy undergarments and lipstick marks on your sheets from the previous night’s romp. If the doc puts up a fuss and lectures you, it’s time to pull out the greatest excuse known to us CFers. “Doc, I have cystic fibrosis. What did you expect me to do, say no?” Likely, you’ll get a wink and an approving “don’t let me catch you doing that again” look. Offer to show him the video when he’s cowboy enough watch it.
  6. I.V. Hell. This one is a classic, needs to be done early in your stay, and works best with residents. And you’ll need the help of a nurse. Have the nurse dress your neck like there’s an IV inserted in your jugular vein. When the doctor comes in and says, WTF, keep a straight face and say: “Yeah, I was surprised, too, but they said it was there or [point to your private area]. Not much of a choice now was it, Doc?”

    It's hard to find ruby slippers in an 11

  7. The Wizard of Oz. This trick will require some money and a trip to the costume store, but it’s well worth the investment. Each day you’re in, wear a different Wizard of Oz costume. Think of the fun you’ll have growling at people as the Friendly Lion, and making a hay trail as the Scarecrow. When you’re the Tin Man, here’s your line: “I hope you brought a strong needle today, babe, cause I’m 100 percent pure tin made in OZ.” Always wear the Dorothy costume on the final day, as nothing brings about a psych consult like cross dressing in Oz costumes. Also, don’t forget the stuffed Toto for that added detail.

BTW, @onlyz can’t count. Have a good weekend.