Tag Archives: cystic fibrosis

Monday Musings – Lawyers, CF Doctors and the Truth

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[This is an entertainment site. No medical advice is given. All readers are responsible for their own actions. All medical decisions are best made with a doctor’s advice.]

I read an article recently about a murder trial in New York. The author described the evidence in the trial as something each side, prosecution and defense, turns into a narrative they tell to the jury. The jury believes the side that tells the most compelling story with the evidence they have. I’m not doing justice to the eloquent way she described it, but that’s it in a nutshell.

Today I ask the following question: In creating a narrative from evidence, is what lawyers do that different from what CF doctors do?

Read the forums on cysticfibrosis.com. Different treatment methods fill the virtual pages, causing confusion and discussion. Some doctors prescribe steroids; some don’t. Some prescribe Pulmozyme before HTS; some don’t. Some prescribe Cipro three times a day; some don’t. You get the idea.

The Truth?

Remember Jack Nicholson in A Few Good Men – “You can’t handle the truth.” You’re right, Jack, I can’t. That’s because, as I’ve written before, the truth does not equal fact. Truth is a myth, often overrated and sometimes a lie. To tell you the truth, it is one’s interpretation of the evidence. When a witness offers to tell the truth and nothing but the truth, they do, but it doesn’t mean they were accurate. Witness accounts are often proven incorrect.

@CFFatboy wrote an excellent post last week describing how his doctor was going to put him on Cayston every day with no off-months and with alternating months of colistin. Cayston everyday? Not one month on, one month off? My doctor coughed up a hairball with I suggested two inhaled meds at once, even though my logic was that we do it with IV meds, why not inhaled? I’m not saying one method is right or wrong. It just shows the challenge of deciphering competing CF narratives.

If I had a dozen CF doctors taking care of me, I could cherry pick from their treatment plans and create one of my own.

Treatments for this disease vary to the same degree our genetic defects do. Each doctor works from their evidence: the medical papers, case studies and patient files.  From that, he or she creates a treatment plan. And, many times they come up with something based on . . . well, who knows sometimes.

Many years ago, I told my doctor that I felt really good taking Ibuprofen. He said he didn’t think it would make any difference but if I liked it “what could it hurt?” which is “doctor talk” for “you have CF so WTF – live it up.”  Now there is a page on the CF Foundation web site about Ibuprofen as a possible treatment for CF. I asked him about low testosterone. He said mine was probably fine and no supplementation was needed. Look what we know about cystic fibrosis and testosterone levels now. Treatment may be required.

As patients, we may be ahead of a trend because we have Internet access to the evidence, too. With it, we can create our own narrative or truth. And many times we discover it sooner than our doctor who hasn’t read what we’ve read or lived what we have lived.

And though I don’t recommend any therapies here, I see that situation developing now with BITC. Once again a potential treatment may be ahead of the curve. What is the truth about this chemical and its potential as a CF treatment? I don’t know. Once I figure out how to get some, I’ll discover what my truth is, so help me God.

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

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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

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[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

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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

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[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.


Back on the canvas thanks to my stomach

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I thought I was doing better yesterday until around five. That’s when the low grade fever and bloating that made me look like a pregnant woman hit me hard. I was so close to going to the ER, but I dug deep until the Tylenol kicked in and reduced the fever and pain.

This morning the doctor placed me on a liquid diet, which is a frigging drag. It seems to be helping, however, as I’m not running a fever tonight and feel a little better, though I still look pregnant.

I have a doctor’s appointment in the morning. Can’t wait to see what ails me. Ah, the joys of CF.

One of the parts I enjoy least is trying to work while not feeling well. Working today was a grind. I am no sympathy for healthy people who don’t get their work done. 🙂

That’s it for tonight. All the best to everyone.

Fox Ventures Out for a Day Trip

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Fox is a trickster

Fox jumped out of my computer today and landed on my desk, sending papers and books everywhere. Then he sat and stared at me with his fox eyes, making it hard to concentrate on my work. Finally he spoke and told me he had a gift, but I didn’t see a package.

Everything went black for a second. Then I had a vision:

My tweeps and I were in the middle of the Pacific Ocean on a fast-moving yacht.

Dragging in the water behind the boat was what looked to be a giant green Michelin Man, but it was really cystic fibrosis. Sharks were tearing pieces off its body as it bounced up and down on the water. It was still alive, but clearly suffering, and had seen better days before it had become a toy for the sharks.

@CysticGal walked up to me holding a paint brush. “I’m painting the yacht purple,” she said.

“What happened to pink?” I asked.

“Purple is the new pink, dummy,” she said.

She looked fantastic in a sharp-looking Calvin Klein boating outfit and Jimmy Choo deck shoes. She walked away and splattered purple paint all over the deck. Magically, each splotch transformed into a perfectly shaped flower.

“Hey, Ronnie,” I said as @runsickboyrun and Mandi jogged past me. I did a double-take because Mandi was having a hard time keeping up with Ronnie, who looked supercharged. Their video crew couldn’t keep up and tumbled over the side of boat.

A camera appeared in my face with @onlyz peering over the top. “Cheers, mate. Glad you finally woke up. Thought you was a right bang pludge wonk there.” I had no idea what he said, having left my British English/Real English dictionary at home.

He snapped another three photos, as @CFFatboy, dressed in his tattered college alumni shirt, stuck two fingers behind my bagged head, rabbit style. He had a protein shake in the other hand, but looked like he’d exceeded his weight goal by a few dozen pounds.

“You still need to drink that stuff?” I asked.

“Hard habit to break,” he replied. “Benching a ton these days. Loving that.”

Looked like he weighed a ton judging by his torn clothes, kind of like the Hulk – if the Hulk had a Florida tan and wasn’t green.

I went to the upper deck, passing @rlcarroll working on his iPad, drinking an Old Milwaukee. “You were right, Unknown, this beer is good and my iPad does rock. Who’s Laughing Out Loud now, B-atch,” RL boasted. I thought about kicking the iPad out of his hands into the water, but I saw his sunburn and decided silence is golden.

Tasty goodness in a bottle

A woman with her back to me was loading a large surface-to-air missile launcher. I’d never met her, but I knew who she was.

“Finally, we meet” she said. “You ever going to take that bag off your head?”

“When I can afford plastic surgery,” I replied.

She smiled. I looked at her eyes, happy to finally meet her, and knew today was important to her.  “Will that be enough?”

“Oh, my toy?” she asked, holding up the imposing weapon. “I’m ending this madness now.”

With that she walked down to the back of the boat, passing @seanset, @cfstinabug, @CF_gurl, @Nanosmakemepuke and my other Twitter pals, who were all dressed in formal wear. @CysticGal had changed outfits, too, Vera Wang spring collection, and had some rock star I couldn’t place next to her. She was happy because she set the drink theme as “M,” as she loves alliteration. Everyone drank mohitos, martinis and margaritas.

My newly met friend and her large weapon stood at the back of the boat, CF dragging and bouncing in the water, eyeballing us, fight and anger still in its eyes. But it knew what was about to happen. The hunt was over.

She raised the large MRP weapon of destruction to her shoulder and sighted it squarely at the monster, whispering something to herself, adjusting to the motion of the sea and the monster. Up and down the boat rode the waves until a large crack broke the silence, a trail of flame and smoke followed the shell to its target.

Pieces of CF flew everywhere, landing in the water. @onlyz detached the dangling rope. “Well, that happened,” he said, wiping his wet hands on my bag, making it stick to my head.

We left CF behind, the sharks cleaning up the bloody mess until there was nothing left.

Everyone raised their glasses, toasted, sipped, and was quiet. Warriors lost filled our hearts and minds, as we knew it was time to head to port.

The vision ended there and I was left to wonder when Fox would return and send me back to the yacht. The best was yet to come.

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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