Tag Archives: Health care

Communication Breakdown

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“Communication Breakdown, It’s always the same,
I’m having a nervous breakdown, Drive me insane!”

-Led Zeppelin

When I started this blog for my daughter, I wanted to leave behind an accurate record of what I went through fighting cystic fibrosis. I’m not sure I’ve accomplished that or not. I can tell you that this week the blog feels as live and raw as it’s ever been. I don’t think I’ve held much back, if anything, for better or worse.

I reread the posts and it has been quite a week.

Don't look down. Creative Commons image

If the week has taught me anything, it’s the dangers of miscommunication. That lesson started in the hospital and extended itself into Friday. I didn’t realize how tightly wound I was balancing work and the hospital stay – there’s nothing like a battery of heart tests to keep you from the laptop and to get you behind in your work.

I know I’ve joked about this before, but it would really help if they had a workstation in the room. I need to figure out something better for future visits. Now that I’m older and cranky, it’s not as comfortable sitting at the bed typing away. If I win the lottery, I’m donating a chunk of dough to the hospital to redo all of the rooms Marriott style. I’ll ask them to name it the Fox Lives Here wing, with pictures of my arrogant pal on every wall.

Despite bringing a printed list of meds with me, the hospital seemed incapable of getting them correct. Some meds never showed up. Some showed up two days into the visit. My favorite part: certain meds I don’t take that weren’t on my list showed up, i.e., Pulmozyme, some stomach med they gave me during the last visit, and TOBI, which is wrong because I take TOBRA mixed for the eFlow.

Each time the RT arrived with a dose of Pulmozyme or TOBI in his hand and a look of “but all of you are the same” on his face, I thought Fox might unleash some of verbal kung fu on him.  Worst of all, then you have to argue with the RT that you don’t take a med.

“It’s in the chart,” the RT says.

“The chart’s wrong,” I say.

“The chart’s wrong?”

“Yes, the chart’s wrong.”

“How can the chart be wrong?”

“That’s a good question.”

“The chart’s wrong?”

“Yes, the chart’s wrong.”

“Oh, okay. I’ll go check the chart.”

“Sounds like a good plan.”

Five minutes later the RT returns.

“It’s in the chart,” he says.

“The chart’s wrong,” I say.

You get the idea of how it goes from there. Usually the last line is “I’ll go check it out.” What he really should say is, “I’m going to go on break and your insurance will be billed anyway.”

There’s always a corkage fee at any fine restaurant when you bring your own wine. Why not at the hospital?

Now I know why playwright David Mamet is a genius when it comes to writing dialogue. He writes it with repetition and that’s how many of our conversations go. The RT dialogue isn’t an exaggeration. It takes place in real-time, rapid fire, and lasts 10 to 15 seconds.

But it happens three times a day.

Then I received the email that sparked yesterday’s posts. When you receive partial ALL-CAPS from someone you respect, it sets off a chain reaction. Here’s the kicker. The primary person who read my original blog post, misread my statements, then placed the misreading on the Internet where other people reacted to it, causing my friend to have to deal with it.

I realized this week that the most important game we ever played in school wasn’t really a game or a joke. It delivered a great lesson, but was usually breezed over with a quick “do you get it now?” by the teacher.

The game I’m talking about is when one person tells a secret to another and the secret travels from person to another until it gets to the last person and sounds nothing like the original message.

What chaps my lips is how this game of “communication breakdown” takes place during each hospital visit. And worst of all, how it’s played with only two or three people working from a printed list of meds. They have a program in their head about cystic fibrosis and insert that program, overriding what’s in front of them – especially the doctor.

I’ll email my clinic later in the week about this visit and the story of the printed list. They’re good at dealing with these situations. I’m glad because if I hear “it’s in the chart” one more time, Fox will go postal. Not that I wouldn’t like to see that, but I don’t want to have to switch hospitals. Despite its flaws, I like the one I’m currently at.

Stay well.

Fox’s Adventures in Los Angeles – Hospital Time

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Handsome and curious looking for . . .

Unknown is tired after his jail time this week, screaming for the Lakers tonight with his daughter, and no McGriddles in the last three days.

He asked me, humble Fox, to post in his absence. I’m feeling pretty tired too after my quick jaunt to Vegas last night with a couple of gal-pal nurses. Rum Jungle was rocking. I got thrown out again, but that’s not unusual. What can I say? It’s my nature to cause trouble.

Tonight, I’m going to share a few photos from my vacation. There should be more, but Unknown panicked and forgot to grab a fresh camera battery before leaving the casa. Slim photo pickings thanks to that boneheaded error.

The photo below is the first room Unknown stayed in – for 45 minutes. Then he cried like a little lab pup about chest pain and they took him straight to a lower grade room. Learn from Foxy on this one, folks, never talk your way out of an upgrade. They’ll snatch it from you if you do.

Now this is a room for a hospital party!

Here’s the hole they sent Unknown to after he complained.

Welcome to the garden view, Mr. Unknown

Remember when they strapped Unknown to a table and scanned his heart? This is the badboy itself. Those are the two blue straps they used. 20 minutes of hell for Unknown. 20 minutes of napping for me.

Don't move or you'll have to repeat the test

Someone thought it would be funny to erase the hospital information board below. I am Fox, after all. Everything worked out great and the nurse thought it was cute until she read “patient goals.” The smile fell off her face. Ouch, you nasty boy.

Fox out. Picture below. WARNING: Adult language

You got in trouble, you got in trouble. Ha, ha, ha.

Day 1 in Jail and Fox Looks at the Sun

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I’m in jail.

I had a choice: Spend a few days driving back and forth for outpatient tests or go to jail and get them done there.  I turned myself in. And what a fun first day it’s been.

The day started with a tease. They brought me to a room in the new hospital wing. Excited, I was. Alas, reality crushed that dream hard and fast when they realized I needed telemetry.

“Don’t unpack,” the nurse said.

There was a silver lining. The nurse usually worked on the intensive care floor, so when she asked if I wanted her to start an IV before I transferred, I almost got down on my knees and kissed her feet.  Yes, please.  Start away, O wonderful IV Goddess. Stick me, stick me good.

She aced the IV insertion, of course, like nurses from that floor do. No tapping veins or doing rain dances to summon a vein or calling another nurse to do it after you’ve screwed the pooch three times. Bingo, bango, bongo, she was in and blood was coloring the towel placed on my knee bright red. Afterwards, I almost wanted to see if she could do it blindfolded. I bet she could have.

As this nurse doesn’t deal with CF patients, she cracked me up when she told me meds from home would have to return home. Yeah, sure thing, babe. I’ll get right on that.  Where’s my carrier pigeon? I hope it can carry a large bottle of enzymes, two packs of the xopenex dosage they don’t stock here, and the myriad of other meds I brought. Welcome to CF World, Ms Nurse; it’s different from any other world you’ve ever been to. We have our own rule book and it’s 9,023 pages long. Rule #5,879: Always bring back-up meds.

I got to the “heart” floor and was joined to a heart monitor.  Now they can watch every beat and “misbeat” while I’m in my room working.  How exciting that job must be. One lead was off for an hour and no one broke down my door to see if I was still alive, so someone’s not paying close attention. At some point, I’m going to switch all the leads just to see if they notice. That’s on tomorrow’s agenda.

The RT came along with her high dose of Xopenex that makes my heart race. I was prepared for her. I had my low dose in my pocket ready for the switch. I excused myself to wash my hands, placed her dose in my pocket and then pulled out the low dose. That’s how the magic works, my friends. No conflict or arguments about it with the RT or doc, just smiles and fun. Suckers.  You didn’t even know there was a magic show going on, did you, people? 

The guy in the room next to mine must still ride a horse and buggy to work and write with a quill and ink. He kept yelling “Nurse, Nurse, Nurse.” I’m thinking, did they not show you the big red button on the remote for calling the nurse?  The same remote that you’re using to change the channels of the blaring TV in your room? He must of screamed it a dozen times. This is why some people get a pillow placed over their face Godfather-style in the middle of the night. Holy cow.  Somebody tell that guy what century he’s living in.

Many thanks to everyone for the kind thoughts and messages. They make a difference. When I wrote that CF drove me crazy, I wasn’t making it up was I?  You won’t see the CF Foundation posting any videos of me on their web site. No, I’m the poster child of what you don’t want to do when you have CF. Someone has to set the bar low. Happy to do the job.

Stay well.

The real truth from Fox.

There’s one part of the adventure Unknown left out. When they brought him to the Heart wing, his heart almost fell out of his pants. The most smoking hot of hot nurses got assigned to him. His worst fear. We’re talking stripper hot with long brown hair and green eyes. A nine out of ten, like looking at the sun.

Unknown’s a gentleman and averted his eyes. Not me. I’m a fox. I looked and my eyes burned. But it was worth the blindness.

I prompted Unknown to suggest they bring a pole into his room to see her moves, or just drop a couple dollar bills on the floor to see what might unfold. No luck. This Unknown is the wuss of all wusses. I’m stuck here because his little hearty heart did go pitter patter a little bit funny. No one hooked old Fox up to a monitor when this nurse walked in, but they should have. I’m still dazed by what I saw.

The other terrible part of this current adventure is that there is no beer to be found.  None, not a drop. A little AC/DC playing, some beer and tonight’s post would have had a much different tone. Unknown would have titled it “A letter to my wife: I’m so sorry for what I did in the hospital.” 

This is when I need to be hanging with Tiger, not Chicken Boy.

Someone send a six-pack, a boom box, and a stack of dollar bills. This party needs a jump start.

Fox out.

61-second Rant: McDonald’s Caramel Frappé

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Every day I order my McGriddle, I am bedazzled by posters of the car-a-mel frappé, with its drizzled caramel and brain-tissue-like mound of whipped cream. I sit idling in the drive thru in awe, wondering who needs something like this to get going in the morning. Willy Wonka?

McDairy Queen? Photo rights are mine.

Caramel frappé images haunt me in my sleep.

At what point did morning coffee morph into morning dessert? My grandfather, who drank Folgers from a Mr. Coffee machine every day, wouldn’t have put anything called frappé near his lips. He didn’t need a dessert to get rolling in the morning. He drank real coffee, not a Dairy Queen treat disguised as coffee.

I feel bad for anyone who has a weight problem when I see products and advertising like this. The subliminal and overt messages can crush anyone’s willpower over time.  The caramel frappé exemplifies the excessive and unnecessary caloric intake that has infected our food supply.

Science tells us that we eat dessert last because that’s how out taste buds work. We eat meat, broccoli, and potatoes first for a reason. Sweet foods come second when our taste buds need a jolt to get excited enough to eat more food. Problems develop when dessert becomes our main course three times a day.

We will never cure our healthcare challenges until we say no to caramel frappés and other common foods pumped up by sugar steroids. I’m not suggesting we close the McD’s and Dairy Queens of the world. I love cherry Dilly Bars like my yellow lab loves carrots. I’m asking that we draw a line in the sand of our food supply. Leave the sweets to DQ and the Big Macs to McDonalds; keep coffee black, and whipped cream and caramel on sundaes.

And never mess with the McGriddle.

Stay well.

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60-second Tuesday Rant – My Bucket, Medical Bills and Stratego

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My allergy doctor told me I have a bucket that holds all of my medical challenges. With CF, he said, my bucket is close to full every day. And, it doesn’t take much or even something physical to cause it to overflow.

Medical bills make my bucket blow like a Vegas water show.

I feel embarrassed that I drain the system to the tune of four hospitalizations a year and a potpourri of inhaled and oral meds. It hurts to look at the bills. A panic attack can start just by pulling an inch-thick stack of them from the mailbox. They are reminders of my greatest fear of not having insurance and knowing what I might have to do at that point.

Luckily, I married above my pay grade and my wife deals with them.

But that upsets me, too – the time she spends navigating the maze, making sure we don’t overpay, pay twice, or just plain get screwed. It’s shocking how incorrect the bills are. She has an MBA and an honorary degree in detective work, yet it still takes numerous phone calls to tie the numbers together and figure out what we owe. It also doesn’t help that some bills arrive a year after the service.

What do people without her expertise do? I bet they pay what they don’t owe.

Sometimes, collection agencies harass us for payment while the insurance company and service provider debate who who is at fault for non-payment, each telling my wife to call the other party to resolve the situation. Her phone conversations sound like a lawyer’s, documenting the name of the person, time of the call, and what was said.

Available at Amazon.com

It’s amazing in this age of technology that these problems still exist. It’s not the government who needs to run our healthcare system, it’s Google. Now that’s a company with the communication intelligence to fix the billing errors that take place between the patient, insurance company and medical provider.

I’m not complaining. I’m lucky to have insurance. I just wish it didn’t have to be a game of Stratego every time we open a stack of bills. That’s the part of CF I didn’t anticipate when I was younger – the stress and battle of medical insurance. It’s Stratego come to life with healthcare on one side and my wife and I on the other. Luckily, my wife plays a hell of a game. But it’s a shame it’s not a more friendly game like Candy Land, which doesn’t require a Xanax to play.

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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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 – 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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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).  🙂


Health Care Bill – Call me Switzerland

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How polarizing is the new Health Care Bill? Is there a middle ground?  Were people this upset when we invaded Iraq and spent a ton of taxpayer cash overseas?  There are some fellow cfers on Twitter who are very smart and who oppose the bill.  I have to respect their positions and consider their arguments.

I’m trying to keep an open mind on the new bill and straddle the middle ground right now.  However, for the first time in many years, I have hope that I might not have to take my own life if I lose my insurance due to job loss or exceeding my total monetary cap.  I don’t want free insurance.  I just want the opportunity to buy it. Without insurance, I’m a dead man.

A college professor of mine once said that “truth does not equal fact.”  It applies to the new bill.  There are many “truths” out there right now.  Which one is the Truth?  Once I can sort out the facts from the truths, I’ll take a side.

Until then, come visit me in Geneva.