Tag Archives: cystic fibrosis

Giving it all to my job right now

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I’m leading part of a large training event at work right now and its sucking up all of my creative energy to complete it. And I’m working long days and putting in hours on weekends to finish all of the deliverables on time. Luckily, I’m working with a good team.

I traveled by car last week and was so tired on day 2 of the training session, I looked right at someone I’ve known for 12 years and couldn’t remember his name. Just blanked. Name gone. Later, I had to Google, “fatigue and memory loss.” Yep, it can happen.

My memory improved with a good night of sleep. But why I was so tired was something most of my co-workers didn’t understand. What they didn’t know was when I go back to the hotel, I have 90 minutes of treatments to complete before sleeping. Then I get to wake up early in the morning to knock out another 90 minutes. So, working long hours and having CF is a bad mix on the road and equals limited sleep.

And I have more travel coming soon – on a plane.

I don’t remember the last time I was on a plane. It must have been at least three or four years ago. I’m going to give it a try again for this project that has consumed much of my time these days. I’m not looking forward to flying, and a small nugget of fear in my head grows larger as the day approaches. I will self-medicate for the flight.

One worry I have is that I now use O2 at night. I need to find a place that rents O2 generators in the other city. My center couldn’t help. So, I’m going to call the CF center where I’m going to ask if they can help.

That’s it for now. I miss blogging. But there are bills to pay and a 12-year old to send to college. No rest for the weary.

Hernia Surgery – Part Two

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I was rabid when they wheeled me to a non CF-Floor. Tasmanian Devil, I was.

The “normal-people” floor meant I’d be forced to explain my meds and condition to a nursing staff lacking in CF experience, which is a pain worse than surgery. It’s one thing to be a mutant, another to have to explain it to others.

And being admitted late on a Friday night? God, no, not the back-up staff.

Having not anticipated the overnight stay, I was missing my med list and usual survival pack of enzymes, nebulizers, and other meds it takes the hospital a couple of days to get me.

The Universe spoke: “Let’s see how you do when I drop you into the middle of Hell with just an iPad mini, five bucks in your pocket, and a catheter in your bladder. Have fun.”

Survival mode entered. Not because I thought the hospital would kill me overnight, but because of what it might give me in the short time I was there. Or, what I like to call a medical “parting gift,” like C Diff or a blood clot. Or a new exotic bacteria. Or a virus. MERS anyone?

My mind swirled with the possibilities of what an open, oozing wound would earn me this time. Flesh-eating bacteria? Staph? MRSA?

Nurse, can you get me some scuba gear, a wet suit, and a spear gun, please?

Early that morning, they removed the catheter and gave me a window of six hours to urinate. If I didn’t, my pal Foley was going back in. Hell no.

I started drinking bottle after bottle of water, one after another, filling up. If another catheter was in my future, I was going to make sure that when they tapped me it was a Yellowstone geyser, not a trickle.

Luckily, the floodgate opened within the first hour and opened and opened and opened again, making me regret drinking so much.

Then it took another 5 hours to discharge me because once the hospital has me in its clutches, it doesn’t want to let me go. I’m one of its favorite patients.

*      *      *

It’s been two weeks since the surgery. I went back to work on the Monday after the surgery and learned why some people get a week off, which I declined. It was a grind of a week and each afternoon ended in a face-down nap.

I think I tore the outer incision a bit because it’s been oozing and I have to place gauze over it daily. Fingers crossed that it doesn’t become an infection.

I’ve been very happy since the surgery. And it’s not because of the giant supply of painkillers they gifted me – I’ve taken two. No, it’s something else.

It’s shockingly clear image of the man across from me who had cancer and a blood pressure so low I can’t believe he was living. And the person next to me who had cancer. And the woman in the waiting room whose husband had cancer.

I’ve been really happy just to be alive since then. Every day is a gift. Sometimes the Universe reminds me of that in the strangest of ways. But the signs are always there.

 

 

Hernia surgery – part one

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The least exciting picture I've ever placed on my blog. Cork in a swollen tummy.

The least exciting picture I’ve ever placed on my blog. I call it, Cork in a blowhole. (I forget why the doctor in training wrote something on my stomach before the surgery. It’s not like I have a left and right belly button.)

Hernia surgery rule I didn’t know: you must be able to pee before they’ll let you go home.

Surprise.

So, for about four hours or so – time was a blur – I walked the floor of post-op, now completely void of other patients, and visited bathroom after bathroom, where I’d turn on the hot and cold water in the sink, then flush the toilet over and over, and hope to wake my bladder from its medicine-induced slumber.

At one point, while looking down at my left hospital-sock covered feet, a large puddle of water approached. The sink had overflowed and filled the bathroom. Oops. I blame the painkiller shot they gave me after surgery.

Hanging over me was the threat of a catheter insertion and overnight stay in the hospital.

Thus, with the clock ticking and the staff filtering out for their weekends away from patients with cancer and other surgery-required aliments, which made me once again realize how thin the thread of life and good health is, I drank bottles of water and juice boxes and talked to my bladder as if it were God, begging it to come through in the clutch and save me from having a rubber hose inserted in my penis.

Luckily, I had a heroic nurse who stayed after hours to give me a fighting chance. But despite that good luck, there was the opposite, like the fear tactics a less sympathetic nurse thought would help, like telling me how thick the rubber hose of the catheter was, and the giant poster in the bathroom stating how catheters are one of the leading causes of hospital infections.

In the end, I could not pee.

Urine fail.

Commercial Break: [Announcer Voiceover] “Say “hello” to Foley, the rubber snake plumbing pal you’ll wish you never met. He’ll enter what you always thought was a one-way pipe. You’re going to wish you were still asleep on the operating table because no amount of lube is going to help you ignore Foley’s presence in your most sensitive of body parts. You’ll scream like a baby every inch of the way.”

Yes, put down “Foley insertion” on my list of least favorite medical procedures – and the one that made me cry out loud.

But, best of all, thanks to my buddy Foley, I earned a night in the hospital, my favorite place in the entire world.

Thanks, Foley.

(Foley: You’re welcome, Jackass.)

To be continued.

 

Pre-op appointment

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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.

 

Work, work, work, work, work and other stuff.

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I’m “first-drafting” this post just to get back in the habit of posting. I feel like I have to create a masterpiece each time with photos and it’s keeping me from blogging. It’s like going to the gym again – set the goal low and start over. 

This is my “going back to the gym” post to get in shape. 

Update time. 

My broken ribs are feeling better. No pain. 

The shingles have slithered back into their hiding place. Pain gone. 

I’m scheduled for hernia surgery in May, yay. Never was any pain. 

Work. Still painful. 

Of all the stuff I’m stressing about, work is number one on the list. It’s time to move on and having cystic fibrosis is definitely limiting my choices – choices I would have if I didn’t have CF, or if they’d found a damn cure by now. Oh,well, whining won’t help. My situation could be a million times worse. But it doesn’t give me magic powers against stress. 

Had a stomach virus this weekend. So did our dog, who barfed on our new rug, which was cheap because we have dogs that barf on rugs.

Why pay a lot of money for something a canine is going ruin one day. We have five rugs in the house and Cali managed to nail three of them, one of which is now in the trash, which tells you how bad it was. 

I’ve been watching too much TV at night. 

I did finish several projects on my never-ending list of projects. Happy about that. 

That’s life in Los Angeles, the Valley. It’s pretty good and I lived to see another day. No complaints. 

Oh, one more thing. I’m hoarding pain pills. Amazing how many the doctors prescribe, and I should get more after the hernia surgery. They’re fun to take and make my stress disappear, though it’s a really bad path to take and I don’t suggest anyone do this, especially since everything I say is a lie. I joked with my friend Larry that he’ll be reading a rehab post soon. Hmm, might happen. Anyone taking bets?

Until next time. 

The hits keep coming

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Today’s my first day off of painkillers in over a week. Oh, how I miss them. Hello, aches and pains. Life is better on painkillers (kidding), though I have to say it is (kidding, I think). Okay, some frankness: I probably could have justified a painkiller or two today. It’s not as if the coughing didn’t hurt – it did.  I just felt I was enjoying life a bit too much in an altered state. So, I stayed normal for the day. Boring.

I was too lazy to shoot my own stash of these. Is it my imagination or do these pills look like breath mints? I tell you, the breath mint companies would sell a lot more of their product if their mints made you feel like these puppies make you feel.

I was too lazy to shoot a picture of my own stash of these. Is it my imagination or do these pills look like breath mints? I tell you, the breath mint companies would sell a lot more of their product if their mints made you feel like these puppies make you feel.

BTW, I have two hernias. One I’ve known about for a long time. It’s a large bulge in the middle of my upper abs and rises like an Alien is ready to rip through my gut when I do a sit up. It’s kind of gross but the doctors in the hospital have said if it doesn’t bother me then let it be. Easy for them to say. They don’t have a creature living inside their stomach.

However, now I notice a bulge from my navel when I cough. So, it’s off to the hernia surgeon next week.

Hmm, broken ribs, a couple of hernias? Winner, winner, chicken dinner – in the hospital. 

It seems to me that one day . . . possibly . . . maybe . . . it could happen . . . I might cough so hard that the upper half of me just explodes. Boom. Bang. Explosion cough.

One minute I had a midsection, the giant cough happened, then my office walls were covered in blood, mucous, and organs, with a few ribs sticking through the drywall. Watch as my head rolls off my treadmill and is buried in the backyard by one of my Labradors.

And there’s more.

I took another hit recently when I found out the drug study I was supposed to be in got cancelled. Four months of waiting down the “CF sucks” toilet. Flush.

It took my breath away when I found out, and my daughter and wife cried. I think they felt worse than I did. I guess it’s why I never mentioned it on this blog. I kind of expect good things to fall through sometimes and I thought it would be bad luck to talk about it. It didn’t matter in the end.

That’s it for tonight. It’s broken ribs, shingles and hernias week at my house and we’re all celebrating, though clearly I have been celebrating more than anyone else thanks to my pal Norco 5/325. Yeah, baby.

Life is still good.

1, 2 punch of cystic fibrosis and James Dalton

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One of my favorite movies is Road House. Patrick Swayze plays James Dalton, a “cooler,” aka bouncer, or “bar consultant.” When a bar or dance hall needs to clear out the riffraff, he shows up and kicks the sh** out of bad people. If fact, he knows how to rip a man’s throat out with his bare hands – and does.

The end of the 80s and the last of the neon fonts.

The end of the 80s and the last of the neon fonts.

Great movie. Masterpiece.

In one scene, after Swayze’s character is stabbed, he walks into the ER with a thick stack of medical records outlining his long history of injuries, and passes on the pain-killer while the model-hot doctor staples the cut closed. Awesome.

So, I’m pretty much the opposite of this guy, except for the medical paperwork.

Sunday, I broke two ribs, but not in a bar fight, which would have been a 1,000 times more exciting than how I did break them. I fractured them while coughing during a breathing treatment.

I’ve never been shot but I can’t imagine it hurting more than the cough that broke my ribs, or the subsequent coughs that came with blinding, nauseating pain. Luckily, I had an unused bottle of expired Vicodin handy.

After a couple of rough nights of not sleeping well, and not knowing I had broken ribs at that point, I visited the Ortho doc. And even though the half-a-dozen x-rays didn’t show cracked ribs, he told me that I had one. He was half right.

Prescription for healing: pharmacy-fresh painkillers, rest, and Motrin – as much as possible without creating a blood fountain in my lungs.

The next day, not satisfied with the broken rib diagnosis, and thinking it was my intercostals because it hurt in areas other than where the Ortho Dr. thought the break was, I went to my CF doc and he sent me for more X-rays.

The Ortho doc must have purchased his X-ray machine from Craigslist, or in a back alley, because the hospital’s machine showed two broken ribs, numbers 6 & 7, and looking at the film even I could tell they were broken.

But that still didn’t explain the additional rib-cage pain was I having.

The next day, a red bump and blotches that were sensitive to the touch showed up on my lower right side – SHINGLES the clown, where have you been?

F’ing two broken ribs and shingles?

Bar-keep, my good man, mix me a Valtrex & Norco 5/325 cocktail, please. Help myself?  Why thank you very much. I will do just that. 

Yes, once again cystic fibrosis hit me with a 1, 2 punch., and expanded my fat file of medical injuries, hospitalizations and surgeries.

The good news, and this may be painkiller driven, is that I’ve been in a pretty good mood about the whole situation. I laughed when I saw the shingles on my side. Who gets two broken ribs AND shingles at the same time? That’s gotta be kind of rare, huh?

It’s good to be King, even when it’s King of the Idiots.

Oh, and the fun of treatments and making sure I don’t cough too hard – well, it doesn’t get funnier than that.

Some days, I just have to laugh at what cystic fibrosis throws at me. That is until I learn how to rip its throat out.

Yeah, swallow this CF. [Throat ripped out, gagging sound.]

Oh, to be the coolest of all coolers.

Bleeding Orange, Blue and Red

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The Tower of Terror ride at California Adventure hoists you up, up, up until the ride comes to a sudden stop and double doors open to the outside world and an amazing view of the park and Disneyland in the near distance. Just enough time to take a breath of California air before the bottom drops out of your world and you plunge to the ground, taking away that last breath and leaving your stomach behind. Screams fill the elevator shaft.

That’s what coughing up blood is for me. The bottom falls out of my life in milliseconds. Hope, stability, calm – they leave me in the time it takes to snap my fingers. It’s amazing how so much chemical reaction can take place in the body in such a short period of time, elevated blood pressure, panic, adrenaline and sweat all mixed together in a nice “fight or flight” cocktail – connecting me to my prehistoric brothers. But this ain’t no Woolly Mammoth hunt. The enemy twisting me into knots lives inside and is microscopic. I’d rather face a furry elephant and take my chances with a spear.

When I look at the red blotch on the paper towel, I wonder where this event is going to lead me. Hospital? Cipro Rx? What is the first step I have to take? Email the doctor right after I put the blood through a series of questions.

Is it new or old?

Pure or mixed with mucus?

Volume? Teaspoon or tablespoon? More? These the questions the CF team will ask.

Lesson I’ve learned: get to the Ativan bottle immediately. If it’s a bad bleed, my rising blood pressure becomes a water-filled garden hose left out on a 100-degree day.

One week to go. Enjoying every day until the game. Pissed about having it in NJ. The NFL made a bad decision having it there.

One week to go. Enjoying every day until the game. Pissed about having it in NJ. The NFL made a bad decision having it there.

The scales of my life needed balancing this week. I was too happy thanks to the Broncos returning to the Super Bowl for the first time in 15 years. There’s a lot of orange and blue in our house right now and we’re preparing for the big game. Should I paint my face? Color my hair orange? These were the tough questions being asked before I sprung a leak.

There is good news. The bleeding stopped the next day and has stayed away. However, it creates a mental state of waiting for it to happen again. Every cough is processed carefully before I get the courage to look at what I coughed up. So far so good.

I just have to make it 8 days to see the Broncos in the Super Bowl. Eight days.

The detritus of my life

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Clean-up needed in aisle 7.

Clean-up needed in aisle 7.

Empty CVS-labeled pill bottles, blue-topped nebulizers with teeth marks, plastic Xopenex vials and “X” twist tops on the floor.  I step on them and curse my laziness yet leave them for the next time I step on them and curse my laziness (my Broncos trash can is two feet away but “da shit” has a way of hitting the edge or catching some invisible air current and going off target.)

My lungs depend on a red Symbicort inhaler that isn’t glazed with rainwater or beside the white chickens.

Measuring devices: Pulseox on my treadmill desktop, FEV 1/6 meter, peak flow meters aplenty – my gift at each hospital stay I’ve had, and a sign of my disobedient nature as a patient – I refuse to use it, I tell the RT, because it’s a crappy measurement of my true lung function. Bad patient, I am.

Colistin months include syringes, half-full bottles of sterile water, empty pink 0.9 saline vials and little glass colistin bottles littering the kitchen table.

Cayston months reveal themselves in tiny beer-bottle brown, sharp metal pull-tops similar to what soda cans had when I grew up, and more empty plastic vials that get squeezed into the brown bottles.

Empty M&M’s Minis packages wait for Cali to steal them from the trash can. Depending on the day it might be an empty chocolate-covered gummy bears container, or the chocolate-covered pretzels I ate that were my daughter’s – I didn’t know at the time, but have no guilt just the same.

And then there are the boxes of hypertonic saline, the sinus flushes, the oxygen tubing I step on in the dark of night on the way to the bathroom. And the grossest of the gross: phlegm-soaked squares of carefully folded paper towel I forget to throw away. Lifeless around the edges, the bacteria glows gold and grows crusty, making me think, this is reason for all of this crap in my life. How is this possible?

I wish for laser eyes to shoot it when I toss it in the air like a skeet, small yellow flames falling to the floor. I hope bacteria scream.

Ah, the mystery. The horror. The mess. The constant need to throw shit away. La Vida Loca, baby.