Category Archives: cystic fibrosis

Hospital stays are like snowflakes

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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.

“It’s not me, it’s you” and other thoughts from a hospital room

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This is the older hospital nearby. I believe it may be the one Marilyn Monroe was born in. There's your trivia for the day. You're welcome.

[Typos are my iPad’s fault – with a helping hand from the WordPress app]

After four days on a floor in the hospital that didn’t specialize in me, my confidence was rocked. Every other nurse I encountered seemed to be plotting how they would inject Draino or some other deadly chemical into my IV while I slept, waiting by my bedside to see my waking face, choking, as they took no action to save me, only smiling at my distress with my last image their middle finger.

Yes, not everyone likes me. Especially nurses who didn’t take studying seriously when they were in nursing school. But now that I am back on the Panda floor with my own kind, I’m living the life of a hermit and pissing off no one with RN in their title. Smooth sailing for the worse patient ever one floor down. But here I’m exotic and treasured. My quirks, not such a surprise. My needs, not so needy. And my fuzzy, furry charm, charming.

My room sounds like a spaceship. This is the white noise of space, a drone, and my room has it. At any minute I’ll be called to board the shuttle to the planet below to discover some life form that springs from an egg and clamps to my face. Yes, my room sounds just like the Nostromo and its constant hum of space ventilation.

And then there’s the pumping of the IV machine like a fast moving clock that skips a beat, but with a grinding of gears quality to it. And I’m leashed to it like a dog to its owner, the line of my port running up out of my collar.

Pieces of Pop Tarts, discarded pill wrappers, and empty hypertonic saline nebs litter my room. It’s a sty. The maid hasn’t shown up since I moved to this room, perhaps fearful, though it’s nothing like the documentary I watched last night, Wasteland, about people who work in a garbage dump in Brazil and the artist who makes them and their recyclables art. Now every time I toss a water bottle in the trash, or any trash, I feel guiltier than I did before.

I haven’t taken a shower in almost a week and I haven’t peed in a toilet either. I have developed the amazing talent of being able to guess exactly how much I will fill the plastic jug. 200, 250, and 300cc are the most common amounts. And there’s always the impressive larger amount that seems to come when the bottle is near full and reminds me of a hot summer day and pouring a Coke in a glass and wondering if the foam will push it over the edge and spill onto the table.

I’ve been walking every day for an hour, up and down the hills, huffing and puffing and having not the wind to blow down any house. But up I go, down I come. There were staff, students and others on the sidewalks today. On weekends, it’s a ghost town and I its lone explorer walking, breathing, breathing, breathing – grateful.

Some nurses hate pandas (or a certain blogging panda with a bag over his head)

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So, you’re in the hospital, your nurse has been out of training for three weeks, and she makes two mistakes. What do you do?
A) Ignore them and hope they don’t kill you
B) Yell at her and threaten to call your lawyer
C) Scream “there’s someone pretending to me a nurse in my room”
D) Point out the two mistakes and ask her to correct them

Well, my nurse removed a cap from my port, which exposed it to room air. Luckily, she had clamped it, otherwise I think it may have started spraying/leaking blood? I’m afraid to ask what happens with an open line. Possible infection?

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So I pointed out her error – calmly – and asked her to change the extension she just contaminated.

Then while she was replacing the extension, she forgot to prime it with saline, nearly pushing a 6-inch section of air into me. Not sure it would have done anything, but I wouldn’t want to risk seeing if my blood stream could absorb all of it.

She thanked me for pointing out her mistake. But after that I got attitude for the rest of the day. It didn’t help that I didn’t trust her and questioned other decisions she made, which wore on both of us.

Then when my wife and daughter came they could feel the tension. Being in the hospital is bad. Having a pissed-off nurse adds a “power drill to the head” layer to the experience.

So, after four days of a mix of excellent nurses and mistake-making green nurses, I took matters into my own hands and called the Panda floor and asked if they had an open room. Luckily, one just opened up, and for reasons unknown, they like me.

Within 30 minutes I was kicking it on a floor where I don’t feel like a mutant and nurses are more experienced in Panda care.

And oh what a difference it makes. I didn’t realize how stressed I was dealing with mistakes and the fear of them. Now I’m where I belong and I can be low-key and not bother anyone. I can sit and write on my iPad, watch ESPN and eat my bamboo without fear of an electric zoo prod to my fluffy, cute panda rear.

[photo of panda by Richard Giles, Creative Commons]

Life as a Panda

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Int – Hospital room – evening

Text message notification rings on the phone.

Wife: Your little girl sure misses u. She loves u an awful lot. Finishing dinner then rest of hw then we’ll call u

Husband: What brought this on?

Wife: She broke down crying when I picked her up from music cried all the way home

Wife: She said she would give anything to have u home

Husband: A lot of emotions at 9, almost 10.

Wife: I guess, I think she understands things and feels at a much deeper level now.

That was the quick surprise text conversation I had with my wife tonight. I was watching a movie on my iPad while freezing my ass off in my hospital room because the nurse turned the temperature down, not up, giving you a clue as to how old she is because she can’t read the microscopic numbers on the dial.

Yes, I am in hell again. My numbers were down this week and here I am in a carnival funhouse. And if there is a theme to this visit, it’s “ignorance is bliss.” I say that because I think it might be better not to pay attention to everything around me while I’m here. Just let things go. Don’t worry about mistakes. But I can’t do it.

I should have known I was in for a bad trip when they put me on a floor where CF patients are like a visiting Panda from China. Oh, he’s so cute. Does he bite? What is this thing you call “cystic fibrosis”? Did you catch it from from eating bad bamboo?

The mistakes started with my port. The nurse had never seen one like mine, even though they stuck it in me at this hospital. She got the needle in just fine but had been sick the day of port needle training and pressed the wings and out popped the needle. Oops, that was a surprise.

Is there someone who knows how to access these you could ask?

Back with another nurse, she stabbed me in the chest again, but it wouldn’t flush unless she pressed on it as hard as she could.

Are you going to stay in my room 24/7 and keep pressure on it the entire time? I asked.

What size needle did you use, the helper asked?

Answer in my words: the wrong size.

How about you try this time, I said to the helper.

He used the correct size needle and proved the statement “the third time is the charm” is true.

Then there was my night nurse who was on his second day soloing. A confidence builder for me, especially when he programmed the IV pump, making it seem as complex as programming the space shuttle for take off. “What happens if I press this button?”

So, as one of the antibiotics runs for four hours, which is hell being chained up for so long and makes me wonder if the benefit outweighs the additional time on the pole, I was surprised to see a full IV bag when the morning nurse came in. So was she, surprised, to see it. Such a mystery for first thing in the morning. Should have had a second cup of joe, my good nurse.

Did it infuse? Or did the saline back up? Is that even possible? Did I just miss a dose? We will never know. It’s the Mystery of the Self-Filling IV Bag and unfortunately Nancy Drew wasn’t here to solve it.

So that’s the news. I am crossing my fingers and hoping they take me to the Panda floor soon so I can be with my own kind and be fed by zookeepers who know what a Panda likes to eat, when a Panda likes to eat, and, most important of all, to never to tell a Panda that he or she is a Panda.

January Malaise

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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?

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

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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

Lucky rock

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An ocean rock attacked me this summer. I wrote about it here.

This is the police line-up of beach rocks. Which one hit me? Creative Commons: Gastonmag.

Quick recap: I was standing in a foot of Malibu surf searching for rocks and shells with my daughter when the water churned a stone into my ankle. I developed a large painful lump and thought, “what bad luck getting hit by a rock while enjoying a day at the beach.”

I went to the doctor and had my ankle x-rayed. Hematoma was the diagnosis. Good news: Nothing serious. Bad news: plaque in the arteries. “Go see your heart doctor right away,” the ankle doctor said.

And I did, leaving a copy of the x-rays with him for an expert to examine. And I was given orders for several blood tests, which I didn’t get because my teeth were being pulled out or cracking and I was busy paying for my dentist’s new fishing boat.

Now we’re back to the present, almost.

The day before Thanksgiving my heart doctor called and confirmed atherosclerosis showed up in the x-ray. I wasn’t happy about the timing of the call before a four-day weekend. However, I didn’t let it get to me. I didn’t think of it once until today when I went to complete the blood tests, and tonight writing this post.

Instead, I spent the holiday weekend looking for ways to have fun each day and not worry.

A new Xbox is in a UPS truck with my name on it right now because 1) I’ve always wanted one, 2) it will be fun for the holidays, and 3) I’m not sure I can play any more Mario and Sonic at the Olympics games.

More rocks to be identified. Creative Commons: Henkster

Again, the keyword here is “fun,” as in, “it’s better to seek fun out than wait for it to find you.”

And the rock I thought was bad luck? It’s now my lucky rock sent by the universe to let me know about a problem that might have gone undetected until the day I yelled at my Denver Broncos to crush the Minnesota Vikings, felt a pain in my chest, and face-planted into the wasabi cucumber dip. End of my story.

So, let’s toast to the writing of a new ending, the endless pursuit of fun, and a lucky rock.

The economy + an uncertain future + daughter’s future education costs + corporate cost cutting and waiting for the return of Queen for a Day

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My wife and I spent some quality time at the dining room table this weekend pouring over what it would cost to move. Over the years, we’ve resisted moving up like many of our friends have. Thank you, cystic fibrosis, for that decision, as my wife needs to be able to afford a house payment on her own and not be straddled by debt.

So, we looked over the numbers. And as much as I want to move, there’s no way around the costs associated with moving, e.g. agent commission, movers, etc.

And then there is the weight of carrying debt. It’s heavy when you’re allergic to it.

The bank offered us a boatload of cash for a loan, or at least it feels like a boatload to us. And we had to laugh because why would we want the stress of starting a 30-year loan with a big payment right now?

Damn, I can get this stove on Amazon for 28 bucks and change. Yeah, baby. I may need it for boiling nebs if we remodel.

Big payment = hello, soup kitchen line.

We factored in our daughter’s future education needs, the current economy and both of us working for large corporations. We’re convinced there’s someone at our companies fresh out of business school looking at numbers and thinking how he or she can save the company big bucks by sending more human capital to the unemployment line. Or by outsourcing our jobs to monkeys – my job at least.

Uncertain economy + uncertain employment by large companies + my uncertain future = staying put.

Now our conversation has moved to upgrading our house – security wall with razor wire first; kitchen second. But totaling up what it will cost us for a new kitchen is causing my wallet to pucker up.

Mormon dream or old TV show?

We had a contractor over and we’ve worked up a kitchen budget. The sound you hear is me gagging on 35K of kitchen debt.

Here’s my new plan: I need to go on The Price Is Right and win a new kitchen. But then I’d have to pay taxes on my winnings. Damn you, Taxman, the Beatles were right.

If only Queen for a Day was still on and my wife could tell a pathetic story and win a refrigerator because God knows a new appliance makes any woman’s hardship vanish.

Here’s the story my wife could tell on Queen for a Day: My husband won’t do dishes or cook. He made me watch every minute of the movie Melancholia. He won’t let me drive when he’s in the car. He’s called me “grumpy” during my special time of month (audience gasps). He’s missing a few bricks upstairs and roams the house saying, “I’m the McGriddler; Batman ain’t got nothing on me.” And he’s so ugly, he wears a paper bag on his head.

Damn, after writing that, I think she wins. I’m buying her a new dishwasher for Christmas. I am the McGriddler and I make the magic happen – one appliance at a time.

How my Post a Day during October got derailed – and other stuff

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I haven’t posted in a few days because a neighbor yelled at my wife for no reason at all. No reason at all. And I walked across the street to find out what it was all about.

That’s it, the reason I missed posts. Simple, but not.

It was the neighbor who who allegedly showed a gun to my other neighbor’s gardener over a week ago. And after the “conversation” I had with him this week, I’ve spent the last two days researching fences and security cameras, catching up on missed work and writing a blog post detailing what happened with this neighbor that I’m not sure I should publish. The situation may have a “legal” future to it.

I may be overstating it, but I’m cautious and it’s unpredictable what will happen next. I don’t want to be water-boarded by a lawyer about a blog post I wrote.

Creative Commons: Photo by Nadia Prigoda

Oh, and we may move out of the neighborhood.

I’m tired of brown lawns, tilting picket fences with peeling paint and cars parked on lawns. If we go a mile south, the neighborhood has driveways filled with cars with paint on them, and gardeners who know the difference between a weed and plant.

I’ll stop here tonight and think about the unpublished post and whether it should go live on the Internet.

****

In other news, I went to my three-month clinic appointment this week. It was okay. My PFTs are holding since the last hospitalization. That’s the good news. However, they are still down from the major bout of flu earlier in the year. I’m not sure they’ll ever rebound now that six months have passed. That is life with CF. We’ll see. I’m putting on a happy face I’ll wear during Halloween.

Regarding the clot in my neck, we may pull the port during my next hospitalization. ARGH

I finally get a port after all of these years of PICCs because I’m going to prison every three months and then I stay out for over six and don’t use it. And a clot develops next to the place it burrows into my neck. Worst of all, I can’t do a Rambo and cut it out of my own chest because the clot would come lose and hurt or kill me.

Add “self-removal of a port” to the list of things to avoid in life.

Once the clot is gone, or covered by cells, and not a threat to take a road-trip south to my heart, we can pull the port and I can go back to midlines. We’ll see. The future is murky and unpredictable, as always.

Murky and unpredictable and full of M&Ms and sushi and my daughter’s book reports and black and white labradors and helping my wife manage the stress of living with me and tiny moments that feel large.

And standing fast when someone crosses the line in the sand.

Derailed by autumn bleeding

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I’ve felt off this week, not 100%. The weather flipped from hot to cold in one day and with it my equilibrium. Today the autumn bleeding arrived.

The good news is the bleeding isn’t bad – yet. But it’s there and I’m now I’m on cipro. And I get to skip a Lovenox shot tonight.

Creative Commons: Lucretious

The bad news is that I took 5 mg of vitamin K when I meant to take 1 mg and the clot in my neck bubbled. I need to get another scan this week. After two months of shots, a little vitamin K shouldn’t rock my clot. My gut tells me the port-line is out of position and won’t let the clot go away. It needs a doctor’s attention, me thinks.

I did force myself to go out in public tonight, but it is an odd feeling to be in a crowd when you have hemoptysis. It’s surreal, like I’m watching life through a movie lens instead of my own eyes. I feel jealously when I see other fathers and their families and think how nice it would be not to be thinking about my lungs and the hospital. I’m sure they have their worries too.

An extra punch to the gut came when my supervisor told me he was changing positions Monday. I had a good relationship with him and he knew my situation. Now I get to explain it to someone else. It would be nice not to have conversations like the one I’m going to have. It’s embarrassing.

That’s it for tonight. Post a day 2011 checked off but not with the post I had planned.