Coming up for air

[There is no medical advice in this post. I’m a complete idiot, not a doctor. Please don’t forget it.]

Her name is JJ and she loves me for me. I don't have to pretend when I'm around her. And she's always there for me.

There’s nothing like catching a cold two weeks after getting out of the hospital to jar your positive outlook on life. Especially when I have a terrible track record against colds. Oh, and then there is the C diff I’ve been battling. A beautiful double punch to the lungs and gut.

One day the sun is shining, the bat breaks, and here comes some splintered maple, WHACK to the head. Hard and fast with no helmet to protect me. I was just sitting there eating my Dodger Dog, watching the game when the next thing I know I’m on my back with a piece of wood sticking out of my forehead and mustard on my shirt.

My daughter brought the cold home, which always makes me feel bad because it’s not her fault it finds its evil virus way to me. Most normal fathers withstand colds just fine. And I think I have a pretty good immune system because the times when my wife gets it too, I fare pretty well compared to her.

It’s the inflammation it causes in my lungs that roasts me. I can’t get the junk out. I recover from the cold, but not its wake.

But since I started taking higher doses of vitamin C, I’ve been faring better. This was the first autumn I stayed out of the hospital in years, and during the recent hospital joy ride, my PFTs recovered for the first time while I was in the hospital, something rare and unseen for many years. And my pulse ox was higher than it normally is for an exacerbation. Odd, but in a good way.

And now, after a week of this cold and a Saturday I can only describe as a descent into Virus Hell – a day of my body and mind misfiring I’ll never forget – and four straight days of eating mostly liquids, bowls of Tom Yum and Tom Kar Thai soup, and flushing my sinuses three times a day, and eating as much vitamin C as my stomach could manage, I’m may see a thin glow in the distance.

And it may not be the fluorescent glow of hospital lights.

I can’t say if I’ll avoid the hospital. It’s touch and go, but there is hope. Scary stuff is still coming out of me. But my lungs feel like they have better air each day and are moving the trapped garbage out.

I hope I don’t curse myself with this post. I know better. But have I made it this time? Or am I being teased?

If I did make it, say hello to my little friend, Vitamin C. She’s my new best pal in the fight.

Something I would give to my worst enemy – c diff

I don’t believe in the saying, “I wouldn’t give that to my worst enemy.” Not me. I’d give everything bad I could think of to my worse enemy. And other than passing on my cystic fibrosis, c diff would be second on my list.

This is the devil picture on Wikipedia? That's the best they can do? Hmm. Oh, well, I'm wishing c diff on the devil, though I have my suspicions he invented it.

Holy f**k, this bacteria is not pleasant. I had to start week three of the Vanco. And just when I think I have the upper hand on it, bang, boom, bang, there goes my stomach again.

Where is my worst enemy to give this to?

I’ve had some days with this sucker when I wished a meteor would fall from the sky, pulverize me and the c diff. Pile of dust and dead bacteria. Kind of like the movie where the hero grabs the enemy and jumps off a rooftop, taking both of their lives, to save the world. Not sure what that movie was called, but you know the genre, I hope. Hero dies to save the world. I just want to kill the c diff for the good of the world (and me).

I’m doing everything right. Taking the vanco on time, eating probiotics, getting sleep, making little c diff voodoo dolls to throw in the bonfire each night in an ancient c diff-be-gone ritual. Then I apply war paint to my face and chest and dance through the neighborhood in a kilt. My neighbors close their shades and turn off their lights. No one home, go away.  

Bacteria have it out for me. Story of my life. Story of your life?

In other random news, my wife is losing hair and is stressed about it. I think it’s from living with me and am surprised it didn’t happen sooner, like a week after she met me.

In reality, it’s probably her job. She stresses too much about it and is 10 times the worker I am. However, we don’t live in a big house or drive exotic cars, and we don’t have a boat or coke habits, and we don’t because we don’t want to stress about these things.

But she stresses like we do have these worries and that’s not right. And if she’s going to stress that much, we may as well move up to a larger house. I’ve always wanted a Porsche. And god knows I can throw a rock in any direction in this city and hit a coke dealer. Oops, sorry, meth dealer. I don’t live in Beverly Hills.

So, tonight I played the following TED video for her. It’s really about happiness, not work, and appreciating what you do have. Hopefully, it will help her fight the deterioration of aging and have a positive mindset. Or not.

I don’t like seeing her go through this, but I’ve been living it for many years and depend a great deal on Super Glue to hold my stuff together. Works like magic.

We all go through it don’t we? If we live long enough. But how we go through it is what matters most, isn’t it? No sense being unhappy about the inevitable. As my ex-friend Fox would say, Party like it’s your last.

(The TED clip is below. It’s funny. Please check it out. It may make you happier. Or maybe it won’t. Will. Won’t. Will. Won’t. Oh, hell, give it a shot. What do you have to lose?)

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.

Saturday Funhouse – Fox Returns with Inventions

Ladies and gentlemen,

I am one handsome hunk of fox

Fox here. I’m back. Did you miss me? If you didn’t, you can kiss my furry butt. I’m Fox and my middle name is “polarizing.” There is no middle ground with me. So, for those who love me, keep reading. The rest of you? Well, you can all F-F-F-Fade away.

Now I know what you’re thinking: Where have you been, Fox? The answer you may be expecting is “I’ve been partying,” which is a good answer, but not correct. You see there’s a side of me most of you don’t know about. I’m an inventor. I have patents for all kinds of inventions. And for the last three months, I’ve been holed up on an island in the south Pacific with my assistants Malorie and Julie, who are both top-notch engineers and help with the math I chose to ignore back in my school days (party or math class? Not a hard choice.)

The three of us have been working on inventions to make the lives of those fighting cystic fibrosis easier, even that jerk-off bum of a CFer named Unknown, whiny loser that he is.  A little blood and he runs to the hospital. You didn’t see me passed out in a hospital bed after my four-day bender with Keith Richards had me spitting up blood in a bathroom in the south of France. Some of us can take it. But I digress.

During the past four months, my brainy assistants and I have come up with four excellent inventions. I’m here today to share them with you. They’ll be available soon to buy, but I’m giving you a preview because that’s the kind of fox I am – generous and sober with my 1-day AA chip, which I’m going to bet on red to win.

Pull back the curtain, please.

Stay out of my room. You're covered in Pa.

Bacteria-finder sunglasses. Wear these glasses and you can see all bacteria harmful to CFers. Pseudomonas shows up in orange. Cepacia in red. MRSA in Yellow. You name the bacteria, we have a color for it. Friendly bacteria show up in blue shades. These are great to wear in the hospital. You’ll look like a rock star to doctors and nurses, while knowing who’s been naughty and nice when it comes to washing their hands.  “Come back when you learn to use soap and water,” you’ll say to the nasty Respiratory Therapist fresh from the bathroom and covered in C-Diff. He’ll stare with a sad-dog grin as you bust his ass for spreading germs and almost giving you the world’s most dangerous case of the squirts.

Am I still alive? iPad/iPhone app. Ever wonder what your temperature is, your O2 sats, blood pressure, heart rate, and heart rhythm are — all at once? Simply download the “WTF is going on in my body” app from Apple and you’ll know in the time it takes you to set down your mojito grande and place two thumbs on your iPad or iPhone. The CF version of the app also tells you if your lung has collapsed or if you’re just a big hypochondriac like Unknown is. And as a bonus, the Fox version has a built-in breathalyzer. Just place your mouth on your iDevice and blow (just the fact you’d do that tells you that you’ve had enough to drink).

Ring of hemoptysis fire

Dragon Gum. Nothing worse than coughing up blood. It’s a drag unlike any other. Chew this new gum and blood turns to fire. It’s quite a trick and we’re still working out the kinks, like timing the combustion of when the blood turns to flame after contacting the gum. I had a hard time kissing my PhD’s for a week after I burned my mouth on the first stick. Plus, my mouth smelled like dead flesh, making me off-limits to the opposite sex. But when this sweet tasting gum works, hello, King of the Dragon Colony. You’ll be spitting fire balls across the room. Take that cystic fuckbrosis.

IV fluid Clothing Pads. If you’ve ever been on home IVs and used IV balls, then you know it’s a pain to wedge it under your shirt by your shoulder while you’re infusing it. Hey there, Jr. Hunchback. We have a solution to solve the IV geek look – IV Bra Pads for the ladies and IV Speedos for the men. Now instead of IVs making you look like a geek, you’ll look like a Goddess or God with amazing physical gifts. And you won’t mind when the zosyn dose runs three hours. That’s three hours you’re eye candy for the opposite sex. “Why is there a line running from your bathing suit to your arm?”

I’m glad to be back and contributing to the CF community again. No need to fill my comment box with Thank You notes. I know you love me and what I do. But, hey, if you have to leave a love note, it won’t hurt me. I am, after all, a sensitive Fox who only wants to fill the world with love and happiness. Or beer and Vicodin chasers. I forget.

Party like it’s your last.

Fox out.

Life in the wild

During my last clinic appointment, I told my doctor that being in the hospital is like being in the wild surrounded by lions and hyenas and other critters intent on making me their dinner. That’s not to say the people who work there have the intention to hurt me – or eat me – they don’t. However, mistakes happen and stuff goes wrong. Some people are better at their jobs than others. The hospital can be a dangerous environment and one that requires my constant vigilance while I’m locked up there.

This appeared in yesterday’s Los Angeles Times:

USC University Hospital was fined $50,000 after pharmacists and staff gave a female patient with cystic fibrosis an overdose of medication in February, causing kidney failure and seizures. The hospital has since retrained nurses to verify prescription orders, created a new pilot program to ensure medications are administered correctly and started randomly auditing medication orders, according to a plan of correction submitted to the state. It was the first time the hospital had been fined.

My best wishes to the CFer. I’m not sure of the outcome at this time, but I hope for the best.

When I was in the hospital recently, they upped my dose of an IV antibiotic I received four times a day. However, the pharmacy kept the 30-minute timeline to infuse it on the label of the IV. Luckily, the nurses caught the mistake, as it should have read 60 minutes for infusion time. They often frowned and raised their eyebrows each time they saw it, letting me know it wasn’t a good thing. I asked them to tell the pharmacy and it took a day to get the label corrected. So, I had to watch over each dose to make sure it was infused over 60 minutes. I’m happy the nurses caught it and told me.

Back to my analogy of the wilderness. I’ve had other incidents, like a nurse telling me at 5 in the morning that they gave me the wrong antibiotic or being given a double dose during a shift change. These are just a few of the events that have happened to me at hospitals. I feel I’ve made a few saves of others by asking questions and staying alert (when I’m not knocked out from being sick).

Here are some of the actions I take during  hospital stays (please note that this is not advice. It demonstrates how crazy I am, nothing more.):

1) I use the high-strength Super Sani-clothes to clean all surfaces I might touch during the stay. That’s right. When I arrive in the room, I put on a pair of rubber gloves and clean the tray table, the phone, the remote, the the bed rails, door handles, etc. Some of the nurses who know me bring me the pads when I arrive. It’s cleaning time.

2) I check all IV medicines they give me  and when they give them to me. I look at the labels and ask questions, and pay attention to the routine. At night, I confirm the schedule with the nurse before going to bed.  There have been numerous times over the years, I’ve called the nurses to give me IVs to stay on schedule. During the last visit, one argued with me over the correct time of the dose. It turned out I had the time right.

3) I try to be proactive. For example, in isolation, I do my best to make sure everyone follows the rules about masks and gloves. I stop people from entering my room, which isn’t always easy and can lead to a hospital employee with “tude,” which I can match. Most of the time, it’s temp nurses and RTs who don’t know the rules and try to sound like they know what they’re talking about when they don’t. Processes can be difficult to train to a staff. Temps don’t always get every memo.

4) I wear gloves in the bathroom (except when washing my hands). C-diff is a killer. Literally. And if it doesn’t kill you, it can make you wish it would. I’ve had it five or six times. I’m doing my best to avoid it. I also take probiotics during the stay and after. My last stay was my best yet for digestion and bowel health thanks to the probiotics. And not contracting C-diff was my reward despite being on three IV antibiotics. I also stopped the Nexium and Zithromax to reduce the risk of C-Diff.

5) Before they remodeled and put a pulse-ox in each room, I used to watch as the nurse cleaned it with a Sani-cloth, not alcohol, and then I washed my hands after using it. Even with one in the room now, I clean it myself.

6) If something falls on the floor, it’s dead to me and goes in the trash. Are there exceptions? Sure. If I dropped my iPad, I’d clean it. Sometimes, my charging cords hit the floor and I have to glove-up and use a Sani-Cloth to clean them. But anything else, it’s outta there.

7) I bring my own Pari Sprint nebs. I hate the cheap-o nebs with the long accordion attachment. I wonder what the particle size is. It doesn’t seem as good as the Pari.

I know I’m nuts. I have other quirks while I’m stuck in a hospital. And after the last hospital stay, I dread having to go back. I’ve knocked out a lot of days there but it’s getting old having to go in three or four times a year. It was easier when I was young and didn’t care as much about living. Now with more to lose, it takes more effort to stay healthy. That’s okay, I’m lucky I have the chance to do it. At least I don’t take that for granted anymore.