Firing doctors

I wish I could fire my stomach doctor like Donald Trump does rejects on The Apprentice. “You’re fired,” I’d yell, my hair combed over in a giant wave of spun gold, imperious to all but the fiercest of hurricane winds. “You’re fired for not practicing medicine the way I want you to.  When I ask for the good stuff, I want the same medicine celebrities get with fake ID’s and by using five or six different doctors. That’s right. I want the stuff that makes my troubles fall away and the paparazzi feel like a minor annoyance, a piece of yellow tail stuck between my gapped front teeth.”

Unfortunately, I’ve reached the point where my stomach doctor sees the world his way and not mine. Time to toss him. Time to move on. Not to the point that I’d visit him in his office and say exactly what I think, which would go something like this: “how hard would it be for you to order a **&@$& H. pylori test? I’m the one who has to do all the work one morning collecting the sample – the one I eventually have to drive over to the lab where the tech behind the counter will open the bag and gag, then walk it with outstretched hands to the poor tech in back who drew the short straw of work assignments that day. Yes, people in the waiting area, I’m the only one not here for a blood test. And I’ll leave in shame as everyone stares at me like I just delivered a strain of bacteria only found on a planet in our solar system that will go unnamed.”

“You, crappy doctor, only have to lift the pen, and fill in a circle on a lab test like you did your questionable MCAT, as there were rumors you paid the smart kid in your class to take it. That’s all you have to do, then tell your nurse to give me the paraphernalia I need to make this act happen the next day. But no. You can’t do it as you don’t see the need. Well, good sir, I’ve had it with you. I’m not asking for a 10K test here. Or, is it because I might be correct? That might make you feel bad or inferior, as I only have a medical degree from the College of the Internet signed by a man in a country that used to be part of the USSR. I feel it reflects my skills in self diagnosis quite well. Yes I do. Jealousy on your part, no doubt, because I made a correct call.”

Then I’d fire him. And when he started looking at me like “big deal, crazy hypochondriac,” I’d throw him out the window to watch him land on his new Porsche. Perhaps, the soft-top would have been a better choice after all, Doc, I’d yell.

Now if only the Donald threw contestants out of the window after he fired them. That’s a show I’d watch, but only if the Donald fired himself first.

Reflections on my recent tussle with C diff

This is what hell looks like for your gut

After 34 days of stomach aches and diarrhea, and heartburn that ate away at my esophagus like an alien ready to rip from my chest and scamper across the room, I can say that C diff no longer holds the upper hand. It causes me great fear to write this because C diff is devious and has in the past come back within a few weeks. That was before I knew about probiotics and the dangers of acid-reducing drugs. So, I continue to avoid Nexium while I suck down billions of probiotics.

The past month has been an interesting story in how doctors approach treatments differently. My regular superhero CF doc saw me first and came up with the  C diff diagnosis (with my help) and prescribed the vanco. I consulted with my stomach doctor during the ordeal. At 14 days, it was clear the vanco hadn’t wiped out the C diff. My CF doctor ordered another six days of vanco. My stomach doctor suggested another 14 and told me he’d call in an Rx for it, if needed. This is always the danger of having two doctors involved. It’s pretty much guaranteed the two will follow different playbooks.

I'm hoping to win a new car and Kenmore refrigerator

With cystic fibrosis, I’m no stranger to this dilemma of different paths. I’ve put myself in the situation may times. Years, ago one pulmonary doctor wanted to treat me with inhaled TOBI and one IV drug. My CF doctor wanted to treat me with two IV antibiotics. I had to choose between the two. And it caused me much anxiety making the decision. This is one of the most painful challenges there is – the fear of making the wrong medical choice. It’s same as the final segment of Let’s Make a Deal when you have to pick between doors 1, 2 or 3. One door hides a big win, while the wrong door sends you home with a goat. (The third door hides about the same value of prize you risked, leaving you neither rich nor poor with your new washer and dryer.) Little did I know when I was a child watching the show at my grandmother’s house that it was really a metaphor for life. Or at the very least, the hard medical choices we have to make.

Luckily, or with educated luck, I chose the correct door in this C diff situation and trusted my CF doctor. He was correct. Had I gone with my stomach doctor’s choice of another 14 days, he would have been correct, too. But hopefully, by not doing an extra 8 days of antibiotics, vanco will still be effective for future C diff bouts.

My last thought on this adventure was that during the weeks of eating soup and drinking Gatorade and avoiding anything spicy or cutting that might upset my digestive balance more than it already was, there was one solid food I could eat which didn’t bother me at all. Yep, one food I could count on. And though I had to go without it for a short period of time while the C diff was hot, it was the only solid food I could count on not to rock the boat.

Long live the McGriddle.

If I had courage

If I had courage, I would . . .

Everything you need to make your point in a meeting.

wear a toolbelt everywhere and with all types of clothing. Like a three-piece suit at a business meeting or a swimsuit at the beach. Though I would have to take it off to swim, as my first try would be my last when the tools dragged me to the bottom of the ocean. That might be the only kink in the plan. However, the toolbelt would be helpful with a business suit. Especially when the smart ass at the meeting says, “hey, Joe Toolbelt, what gives?” One whack of my rubber-gripped hardened-steel hammer to his head would answer that question. “Yeah, that’s what gives, part of your skull, Jerky. Hope you enjoy your stay at the hospital. Now would the rest of you like to hear my idea for increasing revenue or would you like a screwdriver in your ear?”

get a tribal tatoo that covers one of my arms. I want to be a member of the tribe with tribal tattoos, though I’m not sure who exactly is in that tribe. Is it really a tribe? A secret tribe? It looks like a pretty diverse group of people with this type of tattoo. I can’t pinpoint one type. But I know if I got a tattoo to match theirs, then they would regret getting their tattoos because I’d be a member of their tribe and it wouldn’t be a cool tribe if I was a member. No squares allowed. Especially freaks wearing toolbelts all the time. Nope, these secret tribe members would have to go to the plastic surgeon and have their tribal tattoos removed and get new tattoos on their arms. Then they’d start a new tribe. That’s okay. All I wanted was the tattoo, not membership in their stupid club.

Ladies, this one is for you. Not in a million years did I ever imagine putting a photo like this on my site. Consider this your birthday present.

wear g-string underwear in the hospital and pretend I was a male exotic dancer. In fact, when anyone asked what I do for a living, that’s what I’d tell them. “Yep, not earning any tips in here while I’m on IVs, am I, Doc?” Then I would make it sound authentic by adding, “The ladies at the nursing home will be missing their love dancer this week. Hey, doc, you think I could do a gig here, in the hospital? Cheer up some patients?” While in my room, I’d play AC/DC and all sorts of dance music and ask the doctors and nurses to tell me if they liked one dance move over another. “Do you like it when I shake my hips first or kick my leg out and pretend I’m a karate guy?” I know this strategy would get me released to do home IV’s sooner rather than later. Nothing scares medical folk more than dealing with a guy in a leopard g wearing a toolbelt and sporting a tribal tattoo on his arm.

write a novel. Yep, I would sit down and finally give it shot and get it out of my system. Or finish one I started. I would overcome the fear that it would suck and would be a complete waste of my time. I don’t think I have enough courage for that. Not in a million years. Can I paste a bunch of blog posts together and call it a novel? Maybe not. Oh, well, let that be a lesson to you. Or not. In fact, there’s not really a lesson in there at all. Not if I have to call it out to you. It has to spring forth organically. This post is a lesson in what not to do. Do you have any idea what I’m talking about? Good. Neither do I, which is exactly why I shouldn’t write a novel. No one would get past the nonsensical first page. Or the picture of me in a g-string on the cover. I can’t get past the stupid male dancer photo I added. It’s creeping me out. What was I talking about?

Stay well.

Fox designs a line of hospital shirts

You can't keep a good fox down.

Fox here. I’m back. And better than ever. I spent the summer in Monaco with some of my Hollywood friends. I’d love to write about my adventures, but I don’t remember a lot of what happened. I do remember waking up face down on the water bed most afternoons, sometimes wearing the dress of the woman next to me. Crazy fox fun.

The entire summer wasn’t a complete inebriated waste of time. I came up with an cool idea for Unknown – a line of hospital t-shirts. Here’s what I’ve come up with so far. What do you think? A different one for each day he’s in the hospital next time?

Party like it’s your last.

Fox out.

Life at 26,000 feet

I’m not going to live forever. That’s my big revelation for the night. But it’s true. And it has taken me a great deal of time to realize this. I’m not.

I think of my age, 48, cystic fibrosis, and past events. Two collapsed lungs and the small scars on my chest from the chest tubes. A skin cancer removed that left a scar like a bullet hole on my chest because the Vest pulled the stitches apart. A blood clot in my neck that will never go away and required a year’s worth of shots in my stomach to prove its permanence. It too has left a mark on my chest, though this one is different from the penetration scars. Blue veins zig zag to create new pathways for blood flow and look like a map of highways across the USA. So my doctor says, the reason they’re there, not what they look like. What I know is that when I take my shirt off there is a story – not all CF scarring is invisible to the human eye.

And there are the hospitalizations. And the episodes of hemoptysis and bouts of C diff. And my irregular heartbeat and mild pulmonary hypertension. And the fact I’ve reached an age that kills healthy people. Cancer, heart attacks, strokes, bad eggs. You name it.

But I need to live 10 more years, to see my daughter graduate high school. That’s my goal. To see her graduate. That was my mother’s goal, to see me graduate high school. She had it easy thanks to my set of defective genes. But now I have my goal and I look out at 10 years and think that is a long time to go and a hard road to travel. How many hospitalizations will there be? 20? 30? What unexpected events will rock me? How many collapsed lungs and how much hemostysis?

I love this mountain

How can I even have the nerve to tempt fate and think that I could make it another 10 years with what life and cystic fibrosis have in store for me? I might as well climb Mt. Everest. Which goal has a better chance of happening? Well, obviously, I can’t climb, so I guess that’s an easy one to answer. But just surviving 10 more years is my mountain to climb, my impossible dream. I may not make it past next month with what’s brewing inside my guts right now.

The question I’ve been spending a lot of time thinking about lately is how I am going to spend the remaining seconds, minutes and hours I have left. I won’t presume to think that I have days left. I’ve learned how the karma of this disease works. Pride and hope and ego get crushed fast and hard. If I just string some of these seconds together, perhaps I’ll get a day. If I’m lucky.

Tonight, denial no longer protecting me, I realize I’m standing at 26,000 feet above sea level in what climbers call the death zone. It’s one step at a time now. It will be a victory when I wake up tomorrow morning. That’s how I’m going to look at it from this point forward.

Random Thoughts on a Bad Day

Oh, man. Three good days in a row got spoiled big time today. Must have been the citrus sorbet last night. Who knows? Something inside me goes south in a hurry and in a big way. And it can only be bad things and internal damage to my digestive tract and/or colon. It’s one of those times when I really don’t want to know the answer but I want to get well. Getting old when you’re sick can be a drag.

* * *

I'd like a shot of HFCS straight up, Bartender. Hold the sugar.

I was thinking about high-fructose corn syrup tonight. Who believed this substance was a good idea? Someone who one day thought “sugar isn’t sweet enough – what if I created something sweeter than sugar and harder to digest?” Yeah, genius, that’s just great. Improve upon nature. Go ahead and try.

I can eat sugar, but HFCS makes me feel bad. I’m not sure why, but it does. And it raises my glucose levels higher than sugar. Still, I want to invent Super HFCS. This would be even sweeter than regular HFCS. It would be so sweet that just the smell of it would raise your blood sugar 50 points. And a spoonful would make you pass out. And if you forgot to brush your teeth at night after eating it, you’d wake up with holes in your teeth. Yeah, that’s right, I’m going to make Super HFCS. And believe it or not, people will buy it because people love sweet stuff.

***

Another random thought for the day: Doctors will let you suffer if they think you’re getting better. Any sign of improvement gives them an excuse to do nothing. Here’s how a conversation might go:

Patient: Doctor, I’m feeling bad. Today, I was rolled up into a little ball because of the stomach pain. I cried out for lightning to strike me and put me out of my misery. Help.

Doctor: But you had three good days prior to that, right?

Patient: Yeah?

Doctor: Well, then you’re improving. Today’s just a minor setback. Overall, you’re improving.

Patient: But at one point my stomach ripped open and I had to push all of my guts back in. I’m not sure I put them back in the correct places.

Doctor: I’m sure you put the puzzle back together just fine. You’re trending in the right direction. Call me in two weeks.

Patient: Two weeks?

Doctor: Yep. You’re getting better. Talk to you then.

Patient: [throws the phone to the ground and jumps on it until it’s pulverized into plastic dust]

If you want your doctor to help you, never mention you’ve shown improvement of any kind. Otherwise, you’ll be left to suffer and die.

Stay well.

Day 22 of c diff

On day 22 of c diff and stomach problems, and day 17 of vanco, I have no words to describe the fun. I find it almost unbelievable – an odyssey of trying to figure out what to eat and not eat, and which probiotics work best. Sometimes I am stable only to be derailed by eating the wrong food. Then I go into a tailspin.

I would like to steal one of those tiny cameras you swallow that take video of your digestive system from start to finish. Either that or move to Texas A&M and have them install a fistula in my stomach – like a cow. I prefer option 1.

What I am thinking at this very moment

Do you feel lucky, punk?

[adult language]

I just want cystic fibrosis gone, exorcised from my body like an evil spirit, where it would hang in the air and I’d shoot it with the most powerful handgun in the world, the .44 magnum. So says Dirty Harry. And I believe him.

I don’t want to keep looking up medical information when I’m sick, thinking I have a medical degree and can diagnose myself on a web site. Don’t all diseases share most of the same symptoms? How many symptoms can there be?

I have everything – every disease known to man and womankind. The only question is which one is bothering me today. Fuck symptom finder. I have them all damn it.

Why can’t I take a probe like the one you stick in a turkey on Thanksgiving and jab it in my thigh and find out what’s wrong with me? And why do I know that if I gave the probe’s readout or report to two doctors, I would get two completely different diagnoses and they might both be wrong. Where’s the third doctor when you need him? On a golf course somewhere, no doubt, or on his yacht or private jet or on the moon, drinking lunar mohitos. Fuck them all. Scratch that. Fuck the ones who suck. Praise and worship the rest. They’re good people.

That’s what I’m thinking at this very moment.

Stealing a Post from Dr. Nanos

I just read Dr. Nanos’s new post at http://pleasepassthesalt.tumblr.com/post/984144678/the-perfect-day.

Awesome. In fact, so awesome, I’m stealing the idea for one of my own.

The Perfect Day

If I woke up tomorrow and didn’t have cystic fibrosis, I would . . .

smile like the joker and not have to put on my vest or neb xopenex and two hypertonic salines at 7:00 a.m., each morning for the rest of my life.

be able to skip sitting at the dining room table using the flutter until I coughed up a minimum of six more secretions after I finished the hypertonic saline.

feel better and eat three McGriddles for breakfast.

buy one of those unlimited Jet Blue tickets and visit some Twitter friends across the country. Chipotle anyone? Then I’d pack the family and head over to England and visit a few friends there and watch West Ham United get their asses kicked. But it would still be great because I’d convince my good friend to storm the field with me and cause a riot, as it doesn’t take much to get English soccer fans riled up. I’d end up in jail and not have to ask the jailer if they had a portable nebulizer I could use. Then I’d head down to Torquay, England and listen to a friend spin some vinyl and get drunk until I woke up face down in some cottage with magic elves, who would carry me back to the hotel, where I’d throw up all over the bathroom, ticking off my wife and daughter, who would ask for a new room, but still love me the next day.

travel more on business, which I don’t anymore because of my health and the fact I have to haul so much extra crap with me and fear ending up in a hospital in another state or country.

not do my mid-afternoon and late evening treatments and get to bed before midnight each night.

not boil my six nebs, flutter, and eFlow nebs.

play tennis and plan ski trips and ride my bike until I passed out or found the place where cows have holes in them.

do more with my friends because I’d feel a whole lot better and be able to plan ahead with confidence.

kill all of my enemies. Hmm, maybe not. Perhaps, I would grant them immunity. Some of them. You know who you are, MoFo’s.

go to jail for taking a 3-iron to the car of the guy who threw a cigarette butt out of his window while sitting at the McDonald’s drive thru.

not cough up blood or worry about coughing up blood.

show my wife what it’s like not to have an ill husband.

fly to Denver and watch a Broncos game with my daughter.

move somewhere remote where they have lots of trees and rain in the summer. Somewhere there’s no CF clinic. We could live anywhere. Anywhere.

get more than six hours of sleep each night.

blog about Dairy Queen, not CF.

take the bag off my head.

spend a fortune on plastic surgery.

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Elmore Leonard writes my scene at the stomach doctor

[I can’t write another post whining about c diff. Argh. Instead, here’s a post about it in a roundabout way. I’m a big Elmore Leonard fan. And I wondered what my recent meeting with the stomach doctor would have sounded like if Elmore had written it in a book. Let’s give it a whirl.]

*                     *                  *

The king of dialogue

“I’m going to press on your stomach. Let me know if I cause you any discomfort,” Dr. Wilson said.

“I have a high threshold for pain, doc, press away,” Unknown said.

The doctor pressed, but not hard. More like he loved Unknown and they were courting, laying in the grass falling in love, his hands gently gliding over Unknown’s bloated stomach.

“Don’t hurt your hands, doc,” Unknown said.

The doctor looked like he was watching water waiting to boil.

“I don’t want to hurt you,” he said.

“You’re miles away from doing that. I was hoping for an exam not a massage.”

“These hands know what they’re doing. ”

Maybe 45 years ago, when he was still in his 70’s. Not now. Perhaps back when leeches were state of the art.

“I’m glad you think so, doc, cause I’m not brimming with confidence.”

“I’ve been practicing medicine a long time.”

“Everything spoils if you leave it out too long,” Unknown said.

“I suppose it does, but stomachs don’t and yours isn’t unique. It’s just like the thousands I’ve examined before.”

“Did you feel up all of ’em like you’re doing mine? You’ll need a cigarette afterwards, huh?”

The doctor ignored him and continued his Ouija Board session, looking with his fingers, like he wanted to find the magic spot. Then when he found it, he’d raise one hand in a claw shape high above and plunge it into Unknown’s stomach, ripping the evil spirit out. Unknown would magically feel better. So simple. But it didn’t happen that way.

“Get your clothes on and meet me in my office,” he said, no kiss, no hug, no tug, as he turned and left.

Unknown buckled his belt and walked out of the exam room into the hallway with its stained blue carpet. Five steps at most to the doctor’s personal office. He sat down and waited, watching three fish swim in the dirty aquarium. One of them, something black and yellow, was covered in white fungus. Unknown took his antibacterial gel out of his pocket and cleaned his hands.

The doctor walked in, hunched, but not slow like he needed a walker, yet.

“You may want to clean that aquarium before you lose the last three fish, doc.”

The doctor looked over for a second, a tiny glimmer of recognition the fish were swimming in their own filth and perhaps a new pump might be in order. But that look passed in the time it takes to exhale and he went back to reviewing Unknown’s thick chart.

“I don’t think’s it C diff,” he said, pulling out a single sheet of paper and handing it to Unknown. “Here’s a list of foods I want to you eat and others you’ll need to avoid.”

“You don’t think it’s C diff?”

“No, I don’t. I think you have some inflammation and you need to eat a nice bland diet for the next week or so.”

“What about the low-grade fevers?”

“You don’t have a fever now.”

“I took two Tylenol.”

“We usually don’t see fevers with c diff.”

Unknown sat there, taking in the  doctor’s words, unsure what to say to the man with canyon-sized wrinkles in his face who was writing something on a form. Maybe c diff didn’t cause fevers back in the day when fire was discovered.

“Have you ever used Google, doc?”

“I’m a Yahoo man,” the doctor said, like he was hanging with a group of doctors who were bragging about their alma mater.

Unknown turned his iPad on.

“Maybe you should switch search engines. I’m typing ‘C diff symptoms’ into Google right now. Wait for it. Wait for it. Here we go. Let’s try the first site, doc. What do you think? Oh, my, look what information from 2010 says under symptoms, low-grade fever. What? How can that be? Here’s another site, fever. There must be Yahoo C diff and Google C diff, huh? I didn’t know there was more than one kind of it.”

“I think we’re done. I stand by diagnosis. We’re finished. Hand the nurse this paper on the way out.”

Unknown looked at the doctor holding the paper out, and placed his hands on the armrests to push himself up with effort and control, taking his time. With two fingers, he pulled the exam paperwork from the doctor’s hand in a manner that was correct and polite, and gave the doctor a nice smile, nodding his head like he agreed with his diagnosis, yes, yes, yes. But Unknown didn’t agree and didn’t say anything. Instead, he turned and took two steps, and looked at the aquarium and the fish facing their last days swimming back and forth in water that reminded him of a lake you wouldn’t want to swim in.

He took the paperwork in his hands and rolled the dietary sheet and the exam form up into one tube, like a kid creating a spyglass, nice and tight. Then he took the end of the paperwork like he was placing a round peg in a hole and dropped it through an opening in the plexiglass cover of the aquarium, giving it a push with one finger until it was all the way in and the paper expanded and soaked up the dirty water.

Unknown turned to the doctor and said: “You should Google ‘how to clean an aquarium,’ Yahoo Man, before you kill all of them.” Then he walked out, took the elevator down to the parking garage and drove home.

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