F’ing FEV1

That's about the best I can muster right now. Whereas, on the steroids and Cayston, that would have been a low for me. Argh.

That’s about the best I can muster right now. Whereas, on the steroids and Cayston, that would have been a low for me. Argh.

Most people go their entire life without knowing their FEV1. How lucky is that?

Now that I bought this little FEV1/6 meter, I know mine every day, and throughout each day.

It’s a love/hate relationship. Or at least one of happiness, or frustration, depending on the results. It’s the medical equivalent of a mood ring for me.

On the plus side: The tiny meter did help the doctors diagnose the TOBI podhaler bronchospasms, which were solved by eliminating the podhaler and adding oral steroids and Cayston.

The not-plus side: Over the past 3 weeks, since staring inhaled Tobra through the eFlow, my numbers continue to go down, but not as quickly as the podhaler.

So, the guessing game begins: Am I having bronchospasms? Is the Tobra not hitting the bugs as well? Would oral steroids work again? Is it allergies? Am I reacting to M&Ms or something else I’m eating?

What am I doing to cause the FEV1/6 drop?

It’s difficult to impossible to answer, as I’m not running my life to the standard required for a scientific experiment.  CF is so sophisticated I don’t know if it would matter if I did. Just one more reason to hate the disease.

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.

 

Invaders storm the walls of my castle (another bad clinic appointment)

INT – Castle – afternoon

The lead knight rushes to Unknown with important news. 

It's time to visit my happy place tonight. It looks like this. Ah, that's better. Ocean breeze and salt water.

It’s time to visit my happy place tonight. It looks like this. Ah, that’s better. Ocean breeze and salt water.

Knight: The scum have surrounded the castle and are upon the walls, Sir.

Unknown: All right then, man, no need to panic. We’ve been here before. Piece of cake. Let’s drop some boiling oral cipro on their heads.

Knight: Been there, done that.

Unknown: What? What do you mean by, “been there, done that”?

Knight: We already tried the boiling oral cipro, Sir. It’s lost it touch, it has.

Unknown: Really? Well, that’s not good. All right then, Plan B. How about some flaming balls of IV tobramycin to knock them down? That’s always a game-changer.

Knight: Been there, done that.

Unknown: My God, man, would you stop staying that, please?

Knight: Been there, done that?

Unknown: Yes, that. Exactly. Thank you. It’s no time for negativity. Are you quite sure the last barrage had no positive impact?

Knight: Yep. Not this time. Quite surprising it was, if I must say so. Just bounced right off of them. Quite amazing to see. Tough little buggers and quite angry.

Unknown: I see. Brilliant. Well, what else have we got here?

Knight: For lunch?

Me: For lunch? Are you daft, man? For heaven’s sake. For lunch? Not for lunch, imbecile. To drop on them. To keep them out of the castle.

Knight: Hmm, let me think. [pause while he thinks, and thinks some more] Well, lunch was pretty awful. It might work.

Unknown: Oh, my god. That’s the best you’ve got?

Knight: Well, yes. The ham is quite spoiled. Damn awful. They’ll be throwing up for hours if they eat it. Buy us some time, it will.

Unknown: Oh, damn me. We’ve run out of tricks, haven’t we? I guess we have no choice. Drop the ham. Drop it now. Let’s buy a few hours before we’re buggered for good.

Knight: But we’re out of ham.

Unknown: What? But you just said we had ham.

Knight: Well, not technically. I said perhaps we’d like to consider dropping lunch on them. But we ate it all.

Unknown: Even though it was rotten?

Knight: We used lots of mustard.

Unknown: And the men didn’t leave even a tiny bit of ham for later?

Knight: No, I’m afraid not. We ate all of it.

Unknown: And you didn’t get sick?

Knight: Oh, we got sick all right. Right horrid, it was. Oh, terrible squirts. But we was hungry. What’s a man to do when his stomach calls?

Unknown: Skip the detail next time, my dreadful knight. So, if I’m to understand correctly, what you’re saying is that we’re completely screwed?

Knight: I guess I am. That sounds about right, Captain. Completely screwed. 100%.

Unknown: Very well then, I’m going to walk to that wall over there. And then I’m going to climb up on it, at which point I want you to give me a nice solid kick to the arse, sending me over the edge and into the intruders. I may as well take a few of them with me on the way out. Are you clear on the new plan, my good knight?

Knight: Crystal, Sir. It will be my pleasure, your royalness, to kick you in the arse. My pleasure indeed.

The End

I have no right to complain. Every day I grow old with CF is a gift, but some of those days have their challenging moments. Today was one of those days.

My PFTs are still down after IVs. Or, no improvement. And the reason I can’t hear higher tones anymore is because I’ve lost a portion of my hearing thanks to the dozens of doses of IV tobramycin I’ve taken over the years – one drop at a time. Ouch.

Tomorrow will be a better day. I have a shipment of ham on the way.

8 days of work, football, videos, crappy food, and IV antibiotics

I’m home after one of the least eventful hospital stays in a long time. Other than having to ask for a different nurse after the first one tanked a port-needle change, my prison days rolled by with minimal pain and little to talk to the doctors about, other than why my lung function has dropped and is not improving.

I know most people have one time, short stays in the hospital, but after dozens of visits, I can't take the food anymore.

I know most people have one-time, short stays in the hospital, but after dozens of visits, I can’t take the food anymore.

That is the worrisome part. Or, the part I don’t want to talk about right now.

I pounded out a decent amount of work while in captivity. Sometimes even I wonder why I do it, but I’m just programmed that way.

And perhaps that was the most stressful part of the jail time – work.

Our 8-person group is coming under fire from new management for reasons unknown. It’s a little like elementary school when the entire class loses their recess because of the actions of a few. I just saved anyone reading this the details, but it created a lot of stress for me not just in the way work stress does. Instead it made me realize I can’t put up with some of this bullshit anymore as my life comes to an end. It’s not worth it and my time is too valuable.

I will say this: If it weren’t for my wife and daughter, I might give up. Yes, I know I’m the luckiest man in the world, but even with that in mind, getting painted into a corner in life, or feeling trapped, can make one feel hopeless.

It’s always the total load, trying to work, make money, avoid jail time, keep my lung function up, and float on top of the cloud of trivial bullshit some people live in.

Some days it feels overwhelming and I wish I were pushing a basket around downtown Los Angeles with my black lab and IV machine in tow, which may be happening soon the way work is going these days.

So, with a heavy mind, I spent a lot of time escaping into videoland at night, watching movies or runs of TV episodes, like House of Games (awesome), and Justified (pretty good; I wish I was either the actor that plays Raylan Givens, or Givens himself. There is something to be said for being cool in life).

So, life goes on as I complete the IVs at home, Inipenem every six hours with a 3-hour drip, and Tobra once a day for 60 minutes.

I’ll have plenty of time to think about my next move before others make it for me.

Parody of Mad Libs – Cystic Fibrosis Version

It’s time for some big fun, or a bad experience if you choose _______(adjective) words. © kennykiernan – Fotolia.com

[Remember the rules – ask someone else for the missing words. Be careful, I’m not sure what I was thinking when I wrote this, or which direction the experiment will go.]

Having cystic fibrosis requires ________(adjective) treatments and regular visits to the ________ (place). I force myself to cough up  _____(color) ______ (plural noun) every day in order to keep my ______ (plural noun) free of _______(adjective) _________(noun).

If I  catch a _____(noun) or _______(noun), I get very sick and have to _______(verb) to the _______(location) Once there, _______ (adjective) nurses ______(verb) my _________(noun) and make me ________(verb) until I faint.

I _____(verb) the doctor at the _____(adjective) clinic at least once a(n) _______(noun). During every visit, I blow into a _________(noun) to test my  ______(noun) function. My face turns ______(adjective) and I ______(verb) until I catch my _______(noun).

Sometimes, the _______(adjective) technician x-rays my _______(noun) to make sure I don’t have a ________(adjective) infection or ________(noun) in my ________(body part).

My least favorite _________(noun) to inhale is made of _________ (noun) and ________(noun) and tastes like _______(animal) brewed in ________(bad-tasting liquid).

Thanks to _____(adjective) medicines many of us with cystic ________(exclamation) fibrosis will ________(verb) longer and lead ______ (adjective) lives. We also have a ______(adjective) perspective of life and know that every _______(singular noun) counts.

Stay healthy, my wonderful _______(plural noun).

Today’s butt-kicking brought to you by the name I shall not speak

There’s nothing like a bad Pulmonary Function Test (PFT) to ruin your day. Or your life. And, as I have internet friends going through hell right now with their results and breathing, I’ll leave my crying for another post.

I fell out of my chair when I saw this t-shirt on zazzle.com. I would change "obstructive" and "restrictive" to more adult terms.

But there’s nothing like the feeling when you blow hard and your lungs sound like a they’re a poorly carbureted 67 Camaro. The moment you see the results on the computer screen, your hope, with its eggshell-thick covering, gets crushed.

A surprise punch to the gut. Vertigo-a-gogo. Or what it must feel like when you’re inside an elevator and it breaks away and falls to the bottom floor.

My wife and I went to a New Year’s Eve party. Well, there were only six adults and three kids, but it was fun and I’m defining it as a party. Usually we stay home. So this was pretty darn exciting. Until I saw one of women sniffing with a runny nose, and not looking so good. I knew we were screwed. I washed the top layer of skin off my hands, but my wife was hosed, as women like to hug when they meet.

[Public Service Message: Don’t go to parties when you’re sick. It’s worse than re-gifting a “Seen on TV” present.]

But Monday we felt great as we cleared out the Christmas decorations and I took down the lights. In fact, we had tons of energy – a crazy high level of energy like you get just before a cold but never recognize. Oh, yeah, that one.

Tuesday came and so did the virus.

I maxed out the vitamin C, zinc, Thai food soup, sinus rinse. I didn’t feel too bad, and don’t as of writing this, other than the pounding headache. But at today’s clinic appointment, I failed my PFT, down over 20%. I was on Cipro over the holiday, so now I’m on it longer and have to repeat the PFT next week. Most likely, my eight-month vacation from jail is about to end.

Oh, there was one more punch today. The clot in my neck is still there. The groundhog saw its shadow: two more months of Lovenox shots in the gut.

Here’s one more blow to make it a triple cocktail: I was selected to represent my department at the CES show next week in Vegas. I’ve always wanted to go. Goodbye, dream.

You know what? It’s all good. I’m sending good vibes to those worse off and fighting hard tonight.

As for me, in the immortal words of the Black Knight when his arm was cut off, “Tis but a scratch.”

The Black Knight brought to you by Monty Python

Autumn stumps me

I’m not sure why autumn doesn’t like me. It’s been a trend for many years for it to kick my ass up and down and back again.

This is not Los Angeles in Autumn, which is palm trees and cement. (SXC license)

All three of my embolizations have been in the fall, including one in Germany thanks to hemoptysis over the Atlantic Ocean. I’ve mentioned this before, but I never get tired of telling it just because I survived to live another day.

Even without bleeding in the fall, it’s the season when I’ve experienced the most hospitalizations. I don’t really understand it and my feeble brain has never been able to decode it. I go into the hospital during autumn and usually stay out until I catch the Flu in March.

This year, I’m doing my best to load up on broccoli, wasabi, vitamin C, which I got out of the habit of using in high doses, and vitamin D. I would start taking curcumin root, but with the Lovenox shots, I read it might increase the chance of bleeding, though I may risk it.

I feel like an ex-con who doesn’t want to go back to prison. The thought of it makes me ill.

I should start a pool with donations going to the CF Foundation and have my friends bet on the day I go in. Just by writing this, I have tempted the CF gods to punish me.

My insider advice to any pool players: take tomorrow, Friday. The CF gods are a vindictive and angry bunch.