Pre-op appointment

When I go to Hell, I’ll spend my days filling out medical forms. That’s right. One after another, all day long.

Please list your meds. (But I have a list with me.)

Have you fallen in the last 90 days? (Does being drunk count?)

Please list all past hospitalizations and dates. (Are you kidding me? I’m at the hospital where all of them occurred. Look them up. What do people here use these computers for? Solitaire?)

I’m a bad patient. It’s how fast and how little I can write on these forms to complete them in record time that matters.

I feel like I should get a pass by writing, “CYSTIC FIBROSIS,” across each page, which would result in the nurse saying, “oh, you have CF. Well then, you don’t have to fill out any of this crap. See you the morning of the surgery.”

So, next week the hole in my stomach will be gone. I asked my wife if she wanted to stick her finger in it before it’s gone, but she declined. Chicken.

The night before the surgery, I have to take a shower and then use special cleaning wipes to wipe down my entire body and kill the harmful pathogens. I hope they work on me. They should have given me extra ones.

I watched some youtube videos of hernia surgeries. Yuk. I’ll be asleep – thankfully.

I hope I don’t wake up with a window in my gut like a cow. That would be bad.

Until next time.

 

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Bronchospasms, tiny pills, and the 65-hour work week

It’s a skill to open a box and bottle of baby aspirin in Rite Aid while you’re having a panic attack,  can’t breathe, are bloated from eating 11 plates, or over 22 pieces, of $2 sushi for dinner followed by Baskin-Robbins Watermelon sorbet on a sugar cone, sport an irregular heartbeat, have a blood pressure reading of 150/99 measured on Rite Aid’s free blood-pressure measurement device, and have the strong feeling you’re going to fall into the pharmacy shelves dead, shitting your pants right next to the boxed enemas.

Ironic, it’s the best way to die.

I chewed one pill, then another, and one more for good measure, making sure I didn’t take too many and cause other problems, like coughing up blood, or a another nosebleed from hell.

I walked in measured steps to the Rite Aid cashier and presented her with a mangled box of generic baby aspirin. She didn’t skip a beat scanning the bar code, and I wondered if I was the only one to ever hand her medicine that looked like a bear had opened it.

“Would you like your receipt?”

“Sure. Thanks,” I said, suppressing the urge to ask, in my calmest and most relaxed, “hey, life is grand, and sorry to bother you with this,” voice, “but can you tell me where the nearest hospital is?”

I left with aspirin and receipt in hand and climbed the sloped parking lot, careful not to raise my heart rate and feel more out of breath. At the car, I opened the cap of my personal pill bottle and removed an anti-anxiety pill, Ativan, which is the smallest pill I’ve ever seen, and exactly the opposite size you want to be finger-wrestling with when your hands are shaking. Could the makers add some bulk to it, please? Handlebars? Make it stick to the skin? Something to reduce the stress of thinking you’re going to drop it and watch it roll down the slope of the Rite Aid parking lot, under a car, and into a tar pit of oil slime.

And what choice would there be but to go face-down on the black top, stretch for it, and flick it out, hoping the owner of the car didn’t show up and run you over, or wasn’t a card-carrying member of the Rancho Cucamonga mafia with a fear of people planting a bomb under his car.

But that didn’t happen.

I held onto the pill and swallowed it with a bottle of water that had been rolling around my car for a couple of months, as I forgot to buy one in Rite Aid and didn’t want to walk back. And who knows what I put in my body from drinking hot water filled with leaching plastic chemicals. I’m thinking it will be years before it catches up with me, and odds are that something else will take me out sooner anyway.

While waiting for the tiny pill of happiness and good times to kick in, and hoping my heartbeat didn’t go into A Fib, which I hate, I had the usual internal debate that comes with my panic attacks: To E.R. it or not?

That is always the question, and the answer is always a trip to the E.R., where I calm down and leave with instructions to follow up with my personal physician. But this episode was different, as the CF team had prescribed two weeks of my arch nemesis: Prednisone.

No drug hurts me like this tiny little fucker. It’s the wicked witch to the anxiety med’s tinier good witch. It raises my blood pressure, makes me nervous, delivers hallucinations, and, during tapering, makes me angry like the Hulk, but red, not green.

I waited in the car, then out of the car, then in the car, out, in, out, for the anxiety med to switch on.

Should I try to drive the 70+ miles home? What if I am having a heart attack? Would I die driving?

I practiced my relaxation exercise of taking a deep breath in through my nose while pushing out my already bloated-stomach filled with $2 fish and rice, lots of $2 fish and rice, and blowing out slowly by pulling my stomach in, not the most comfortable process.

And I repeated my usual mantra: I am such an idiot. I hate cystic fibrosis. Breathe. I am such an idiot. I hate cystic fibrosis. Breathe.

And I waited.

*****

My work week started at 7:00 a.m. Monday morning and didn’t end until late Friday night, which I don’t think gives away the ending that I lived. At most I found time to eat and sleep during the week, but the rest was work or thinking about the time-sensitive, large-budget “so everyone has an opinion” project at work. And the pace was intense and filled with barbed wire to climb over.

And then I took a crash course in Bronchospasms 101 and wished that I had purchased my new FEV1/FEV6 meter years ago. At least I had it now and was able to track the TOBI Podhaler shooting down my lung function and oxygen saturation days before a meeting in Rancho.

Ah, more CF cruelty: new med, lower lung function. Are you kidding me? Really? 

After numerous emails and conversations with the CF Team (a great group of caring people), I killed the Podhaler and replaced it with the drug created by the devil himself, Prednisone.

For the first time in seven or eight years, I dropped all antibiotics – nothing or nada in my mouth or veins with “mycin” in the name.

Cold turkey, baby. Where’s my one hour chip?

So, with my FEV1/FEV6 way down, I replaced antibiotics with steroids. Again, are you kidding me? Who thought up this cruel joke?

But once again life proves why a valid medical degree trumps an Internet research certificate: my doctor was right and my lung function started going up once I dropped the Podhaler and swallowed the steroid. But that didn’t keep me out of the Rite Aid Parking lot.

****

I took a risk sitting there in that parking lot and drove home with my pants unbuckled to make room for my whale belly and my “on the go” breathing exercises.  I didn’t care if I lived or died. I just didn’t want to go to ER again. Couldn’t do it. No way. I hate the process too much to endure it. The hours of waiting. The questions. The strange looks. The “you have CF?” comments, followed by something like, “but you look healthy.”

When I got home, I didn’t tell my wife what had happened. I stripped off my office work clothes and put on my work-from-home work clothes. I gathered my breathing treatments, stepped on my treadmill desk , fired it up, and went back to work.

And tomorrow came, again.

 

A bad week sends me to the ER

Last week picked me up like a rag doll and slapped me against the ground hard.

It started with neighbor problems during Memorial Day weekend that led to emails and conversations with the police during the week. Then our yellow lab tore her ACL and went in for a $5,000 surgery for her knee. A rough week at work rocked my equilibrium in the way only work can do, and Saturday morning my heart lost its rhythm and off to the emergency room I went.

Home sweet home.

That’s the executive summary. Here’s the full scoop.

Our neighbor problems continue. Based on my complaint and other neighbors’ complaints, the police visited the parents to let them know the neighborhood was stressed about their daughter. I’m not sure how much it helped. The email from the officer stated the parents understood, but were “not appreciative of all the complaints.”

If we were renting our house, we’d be gone. Owning a home is overrated. My advice is to own a mobile home instead. I wish we did.

Now I spend every night looking at Realtor.com and every available house in our price range. No luck. There’s limited inventory these days. And something about having to move because of uncaring neighbors really upsets me. We may have to move, but it’s not going to be a fast process.

Our six-year-old lab hurt her knee last year. We went to the vet and he took x-rays. He saw a small speck, but felt it was nothing because she was walking okay. But our dog grew more bothered by the knee, so we went back and he gave us the name of a specialist, who diagnosed a torn ACL. In she went in for surgery the very next day. And now our bank account is light almost 5K. We love our dogs in this family. Or I should say we love the yellow lab because we got her when my daughter turned four. She and my daughter have a bond. I can’t explain it. It exists. And my wife loves the dog too.

I may work for one of the top 100 best companies to work for, but that doesn’t mean every day rains gummi bears and I spend half my day at the beach. The term “work/life balance” makes us laugh daily when we talk about the workload. I am going to write more about this in a future post. All I know is that both my wife and I work for large companies and I’m thinking it’s time they started hiring more people to do the work.

Welcome to the ER.

All of this led to my heart going into Atrial Fibrillation Saturday morning and an ER visit. It’s interesting because I thought a heart with no steady rhythm would be a big deal when I got there. It felt like a big deal to me. But despite the my pulse jumping from 60 to 160 and back again, they didn’t exactly rush to help me. I guess if I’d said I was having chest pain, first class service would’ve kicked in. It felt that serious to me. Eventually, they got around to doing something. They gave me a shot of ativan, an aspirin, and a large IV bag of fluid and my normal rhythm returned. But I wonder which came first, the panic attack or the crazy heart rate? I’ll never know.

Now I have to go see a psychiatrist. I know I have a problem with anxiety and need to manage it better than taking an occasional Xanax Skittle. The A Fib episode gave me a scare. I don’t want to go through it again.

And I should add this. I’ve had time to think about the week and what caused the stress. Yes, all of the above happened. And all of the above contributed to the problem. However, it was really the fear of what might happen in the future that pushed me over the edge. What if the neighbor retaliates and hurts my wife or daughter? What if I can’t negotiate my way through the politics of this project? What if I lose my job? My insurance? It really comes down to worrying about the unknown.

I don’t believe in God, but that doesn’t mean I don’t speak to her sometimes as if she existed. And I asked her for a sign. Something to show me I should continue and not give up. To continue to put up with the challenges of life. And she delivered one of my favorite songs, “Blackbird.” Interesting choice. I guess it’s like a dream – it’s my interpretation that matters most, not the dream or the song. And though I thought about not mentioning this part because it feels embarrassing, I’m leaving it in. It is what it is. And it happened.

Caillot de sang sur mon derriere

The Universe tossed me a bone this week.

Hello, Universe, what do you have planned for my backside today?

And yet, at the same time, it delivered another painful lesson to remind me how stupid I am and that I am here for its own amusement.

I visited the cancer hospital, which was an experience in itself and humbling, and met with the colorectal surgeon to fix my rectal prolapse, or what two doctors agreed was a rectal prolapse – first the ER doctor, then my gut doctor, whom I wish had taken a closer look. Maybe he’s dealt with one too many assholes, me, to deal with another.

So, with the opinion of two doctors, I felt confident to make the following statement to the surgeon’s young, highly-attractive doctor in training: “I diagnosed it myself before going to the ER.”

Yes, I looked right into her brown eyes and I said it, selling it with confidence and pride. I should have added: “Give me a mirror and scalpel, hot stuff, and watch me repair it right now. Yes, that’s how awesome and brilliant I am.”

Hello, I’m the Universe. I love it when this idiot gets overconfident. Nothing like a good backhand to the head to teach him a lesson. Wait, it’s about to happen. 

After five minutes of talking about my medical history, it was off to the exam room and getting on my knees and bending over a custom-made, tilting exam table for having your rear-end examined or praying. Or both.

Now I have to mention at this point, as a reminder, as if you needed one, I’m a polarizing person in medical situations that some might consider to be stressful. People either think I’m Mr. Funny Guy dealing with a life of doctors, hospitals, and medical tests, or, on the flip side, the biggest jerk in the world.

Door number two, please.

Many doctors find Home Depot’s tools useful for surgical procedures. And they include a 2-year warranty.

Is there a more appropriate place than an operating or exam room for a joke to lighten the mood? I think not.

Like when the doctor tipped the table forward and my ass raised high in the air for the crammed, standing-room-only crowd of nurses: “Where can I get one of these for my bedroom?”

Dead silence.

Or, how about this classic to the doctor after the scope went in and out and I pulled up my shorts up and faced him: “Well, that happened.” [Confused look by the doctor.] So, I tried to explain the joke: “That’s what Alec Baldwin said in the movie, State and Main, after he drove drunk, crashed with an underage girl in the car, and sent her walking home with a bad injury, then left the scene of the accident himself. ‘Well, that happened.'”

Clearly, I didn’t deliver the line correctly. More silence from the crowd.

This is the universe again. You are such a prick. You never learn. Time for your self-esteem buster. 

“You don’t have a prolapse,” said the doctor.

“What did you say?”

“You have a blood clot, not a prolapse”

“Do I need surgery for that?”

“No.”

Yes, my dear reader, I’ve been walking around for three days thinking I had a backside in need of surgical repair. Perhaps, a symptom of something worse, the C word. But at that moment, happiness flooded my brain and I could have kissed a few of the onlookers (you know who you are).

However, it occurred to me that two doctors had looked at my rump, “my lovely manly rump” (hey, a similar line was good enough for the Black Peas), and confirmed the diagnosis.

Or had I, super-idiot-pretend-doctor, planted the seed in their minds and they followed along?

And then I thought of my wife following the ER doctor’s directions and trying to push it back in place two times a day for the past three days, which according to the surgeon was about the worse thing you could do for it other than stabbing it with a rusty knife.

Hey, it’s an Edvard Munch painting. Oops, it’s just you in looking in the mirror.

Put me back on the bench and whip me for being too stupid to walk the planet.

Agreed. “I diagnosed it myself.” That’s rich. You’re not very bright. That does make me laugh and it’s not easy to make me, the Universe, laugh. Good one. 

But the best, most deflating moment came when I walked out of the exam room and looked down the hall, waved to the doctor and his two assistants, only to have them not notice because they were standing around laughing.

By the way, recounting this story now makes me feel icky inside. It’s one thing to be an idiot, it’s another to know you are and not be able to do anything about it. [hands on head; head hitting the desk over and over. Thud.]

I am like watching a train full of circus clowns derail and explode into a mushroom cloud of fire, flesh, and flaming red rubber noses falling to earth like meteors.

So, it’s two baths a day, four more days of suppositories, some ice packs, and a return visit in two weeks for my next bombing performance. I can’t wait.

Well, that happened.

Yes. Yes it did.

The sadness of gravity

Returning from space can be difficult.

Home, sweet home

I’ve been back for over 10 days and I’m still not acclimated to life on Earth.

Everything was so calm and cozy in that spaceship – Earth outside, round and blue. Just my fellow astronauts to bother me, but few challenges of every day life and dealing with people to stress about. Nope, just the hum of the space shuttle and the child-like joy of existing in a zero-gravity environment.

Everything I needed to sustain my life was in that confined, artificial space. My lungs felt good with reduced inflammation. My meals were brought to me. My treatments delivered and medicine piped into me. Oh, the quality of service in space.

And then I came back to Earth.

And its gravity. And its heaviness.

Its noises and traffic and people. Its smells, odors and sharp edges.

Its speed. Its weight.

I’ve been discombobulated since my return. I don’t feel in rhythm with my environment. People speak but their lips don’t sync to the sound. Damn Bluetooth lag.

Other than work, I’ve been less than productive. No blog posts. Little reading. And I’ve spent a good deal of time playing Forza 4 on Xbox each night. I’m practicing to beat @Onlyz after suffering numerous losses to him this weekend. Damn British drivers.

I have a bad case of the blahs and I need answers.

What’s the meaning of life, Siri?

Siri?

Are you there, Siri?

Is Steve Jobs really God, Siri?

Do the pearly gates have Apple logos on them? 

Siri, do you know what’s it like to be weightless? To float in space? To be confined for weeks at a time? 

Siri, honey?

Who am I, Siri? What’s my purpose? How should I spend my last days on Earth?

Siri? 

Oh, you’re just the beta version. Good, something to look forward to. 

Hospital stays are like snowflakes

The master escape artist

I escaped.

Once again.

Yes, once again, I lived to tell about my journey to the Hospital California. And I wonder if it’s how Houdini felt when he escaped his self-made devices. Until he didn’t.

One day, I won’t, but I’m hoping that day is a long time coming.

But I do feel like I know what it’s like to hang upside down in a straight jacket and chains staring down at the ground and swelling crowd, which in my world is filled with doctors and nurses.

They look up at me, an oddity, dangling, and wish for a single link to snap, to give into the weight, and bring me down to earth. Splat. Now this is something they’ve seen in a medical textbook. Page 898, not unlike an egg hitting the floor.

Once again the experience was unique and unlike any other hospital stay. They’re never the same. New nurses, doctors, personalities, dosages, drugs, tests, sounds, smells – mistakes. Every day a new challenge. Every day a new result. You never leave the same person.

This time, like many others, I left feeling worse than when I went in thanks to C diff. I didn’t escape unscathed. My stomach is wrecked.

Obviously, the antibiotics harm the good bacteria in my gut, but I counter it with probiotics, which have worked in the past. This time the fridge was set to “high” before I noticed. I didn’t know a small fridge could get Alaska cold. So, I’m wondering if the freezing temperature ruined my stock of probiotics. Or if I didn’t take enough. I don’t know. But I do know I’m in for two weeks of vanco, a blowtorch of a drug.

I’ll be dropping pounds in the coming weeks.

You want to know the fastest way to loose weight? It’s not Jenny f**king Craig. It’s c diff. It strips the weight off fast. And you can eat all you want. Doesn’t matter. Shove it all in. Go to a buffet, run behind the counter and protective glass and stick your face in each tray. Eat like a horse. Go mad. Scream out, “I can eat anything I want and you assholes can’t stop me.”  The scale won’t care. It’s magic and never goes up.

I do wonder, and I had this thought in the hospital, too, if it’s not best at some point not do everything right. Not to eat right. Not to do treatments. Not to exercise. But rather, to adopt the Rock Star lifestyle of excess. I wonder. It sounds appealing at times, but not realistic for a long life span.

And as mine may come to an end soon – let’s hope not – I feel more pressure than ever to create something memorable to leave behind. To do something different with the time I have. I’m not sure what it is. Just something satisfying. A good use of my time. Because, god knows, I’m misused what I’ve had over the years.

The pressure of creative success never goes away. It’s a ghost that haunts.

January Malaise

My least favorite month is January – vacation and holidays are over, back to work, cold weather, short days. And the thought of all the things I want to accomplish in the upcoming year but won’t.

Last week, I saw these autumn leaves hanging on and couldn't resist taking a picture. I was rooting for them to make it to spring, but the winds this weekend were too much for them. Hello, bare trees. Looking forward to April.

Being sick since last week hasn’t helped my January outlook, though I can’t blame the weather here this time. It’s been spring-like with 70 and 80-degree days. But it hasn’t helped enough. I’m in the “first-month-of-the-year” funk.

Tomorrow I repeat the PFT and find out if my parole is over and it’s time to go to jail. I have no idea which way the test will go. I’m a shitty judge of my lung function.

How many times have I gone in for the test thinking I’m going to ace it and my numbers will be “through the roof” high only to be disappointed (chump). So, I have no opinion tonight of my performance tomorrow. The numbers will be what the numbers will be. I have done everything I can at this point. It is in Tim Tebow’s hands right now (he’s a god to me after Sunday’s game).

The thought of going in the hospital makes me cringe. It must be easier when the decision is made for you or clear cut, e.g., you’re injured in a car accident and taken to the hospital in an ambulance. But having to check yourself in for two weeks when you’re still functioning, walking, talking, etc. Well, not so easy to do when your brain is telling you, “bad things happen there. Stay away.”

There is nothing good about the place: the process, the routine, the doctors, the tests, the food, the germs, the mistakes, the juggling of work, and the being away from home. There’s not a lot to like about any of it.

Wouldn’t it be nice if there were some cool benefit to going in. Daily massages. Nurse . . . er . . . playtime. [sound of train coming to a crashing stop] That’s it. That’s all I can think of. What else could a hospital possibly offer to make it worth going there voluntarily?

An Apple Store with a 50 percent off sale?

I’m at a loss to think of anything else. Oh, yeah, the feeling better part. There is that.

So, we’ll see. Tomorrow is one more day of January over. That’s something to look forward to, isn’t it? How is that for positive thinking?