Hernia surgery – part one

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.

 

Nose Bleed from Hell

The day after I left the hospital, I woke up from a dead sleep with my nose streaming blood. It bled for over three hours. The first two hours, a steady flow, were the scariest, sending me to the ER at 3:30 in the morning, wife and daughter with iPad in tow. And once again I know why I could never kill anyone. It’s the blood. Not that I’m shy about seeing it, but it gets everywhere. And unless you’re Dexter and wrap up your victim in plastic, you’re going to get caught because of it. We’re still finding brown spots in our house days later.

As I had my hands full during this ER stay and didn’t think to snap a photo, I used a photo from my last visit, which wasn’t that long ago. Argh.

At the ER, the nice, but “unseasoned” doctor first sprayed Afrin in my nose, which is a great trick to know when you need to stop a bleed. But, and here is another important thing to know when you have a bloody nose, if your blood pressure goes up because you’re anxious, the bleeding may continue. And that’s what happened to me, causing an “Afrin fail,” though we didn’t understand the blood pressure connection at that point.

Move on to Plan B and bring on the tampon nose-balloons. Insertion and inflation complete, I bled around them, over them, under them. Until I didn’t. Then the blood built up and drained down the back of my throat. Then they leaked again. Second fail. What’s Plan C?

I had a moment where I wondered if I should invite my wife and daughter back to the room filled with red and white towels because the doctor sounded like he was out of tricks and I had this strange feeling that after all of these years I might be killed by a bloody nose. Irony?

The bleeding went on until I did two things. I made the connection between anxiety and what the volume of blood coming out of my nose and asked for something to relax me. I received an Ativan tablet, which surprised me as they had an IV in me and could have express-trained the dose. I also called my sinus doctor since I thought I needed to take control and do everything I could to fix the situation. To my surprise he called me back, instructing the ER doctor to get my blood pressure down (as in get me to relax), tilt my head forward, and place an ice pack on my nose and forehead.

Hello to more Ativan and a blue bag filled with ice. 30 minutes or so later my nose was down to an annoying faucet-like drip and I was slurring my words. And after three hours at the ER, I let my wife drive me home.

Nine hours after the bloody nose started, I arrived at the sinus doctor. He deflated and removed the balloons, mixed up some glue-like substance that reminded me of the time I epoxied rebar into cement, coated my sinuses with it, and the bleeding stopped. Relief at last.

He sent me home with a prescription for Ativan and the following advice should my nose start bleeding again: shove Afrin-soaked cotton balls up my nose, lean my head forward, squeeze my nostrils, place an icepack on my nose and forehead, and find a quiet place to remain calm. And kiss my ass goodbye.

Okay, not the last part, but you know that’s what I’ll be thinking if it happens again.

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?

I am Jenga Man

This is me years ago. I have a six pack and a block missing upstairs.

After 15 days of the greatest fun I could ever imagine, I’m home from my vacation in the hospital. I have the deepest Tobra tan ever on my kidneys. Too bad they don’t show.

I’m surprised I survived this jaunt. I am, really. When my multi-resistant bacteria fire up, they do a number on me. And my bonus of premature appendix surgery, puppet hands, two blood clots and medium-well-done kidneys made the stay memorable.

And then there’s the prize I won behind door number 3: a big piece of plastic implanted in my chest and jugular.

Is it too late to trade it in for the cash? Why do they bother to color it? Am I supposed to feel better about it because I know it’s purple? Why can’t I have one in Home Depot orange?

I can’t say I’m in great shape today, or that we knocked the bugs down like we’ve done in the past. I feel discombobulated and am still coughing up more than I normally do after two weeks of go-go juice. I’m doing my best to stay optimistic but I wouldn’t be surprised if I make a return visit soon.

Work today ≠ Fun.

This is me now. Hey, somebody give me a hand here. I am missing blocks thanks to my crazy pal, CF.

Back in the day, hospitalizations were mellow events. The Doctor popped in for five minutes to make sure I was alive, and eventually kicked me loose to finish IVs on my own. We didn’t take blood or worry about my kidney function. I lifted weights and went about life.

When I needed to remove my PICC, I tied it to my dog’s tail, took a deep breath, and tossed a ball. Out with the line; back with the ball. Thanks, Nurse Chocolate Labrador. She was wired to assist.

Now hospitalizations are advanced Mensa-level problems straight from an episode of Star Trek. At some point, even Capt. Kirk would give up on me – too complex to solve.

The day the hospital doctor discharged me, he said he told his team that as long as he started his day with me, it was a good day.

Is that because I’m such a joy at 9 in morning – doubtful – or because I am so screwed up, he felt better about his day ahead and life? I didn’t ask. I was happy he released me.

Thank you for all of the comments and best wishes. As always, they made a difference, and I read each one twice – because I’m dimwitted and must.

Stay simple to solve.

No one lives forever

Par-a-noia strikes deep
into your life it will creep
it starts when you’re always afraid
step out of line the man come and take you away
Buffalo Springfield

I look better in black and white

I have a plane reservation for Monday. I don’t remember how long it’s been since I’ve flown. A year? Over a year?

Travel with cystic fibrosis hasn’t always been kind to me – hemoptysis over the Atlantic Ocean, German hospital; collapsed lung over Texas, chest tube and chest tube redux; and half-a-dozen or so travel episodes of coughing up blood, even in Hawaii – how screwed up is that?

And recently, I’ve had two embolizations and unpredictable moments of bleeding, sometimes due to exertion.

So, the thought of getting on a plane Monday scares me. It’s fear, pure, simple.

It bothers me to realize I’m afraid of something – deeply afraid.

Bad things happen when I travel.

If my lung bleeds on the plane, how much will it bleed? Will I be able to walk off the plane? Or, will I be carted through the airport to a waiting ambulance, my shirt Rorschach-red, people staring?

My crows fly wild, agitated, noisy.

The icing on the cake of indecision is the head cold I’ve been fighting with nasel irrigation, tea, vitamin D and M&Ms. The decision may not be mine to make after all. The cold may force me to stay home in what I like to call a “career-limiting move,” as if I had a career. But I have job, with health insurance. I’d like to keep it.

There is also the voice inside I like to call the “Train-wreck Watcher.” It gives me courage to go, to get on the plane, and see what madness might play out – to witness a possible derailment: a hospital in NJ; coughing up blood in front of my co-workers; or dealing with breath-taking stress and feeling trapped.

Train-wreck Watcher says: Is there anything the disease can throw at you that you cannot manage?

I don’t know. Is there? Roll the dice, sissy boy. No one lives forever.

“Me Time” Is Overrated

My sense of isolation has increased over the years as this disease has worsened. During the past three months and the hemoptysis surprise parties I’ve had, I’ve felt more isolated. I have friends, but it’s hard to plan getting together. At times, when my lungs have gone south, it’s an effort to speak. Or, there are the times I just don’t feel well, which have increased. It’s harder to make an effort to hang out, and easier to stay home.

Life is like a postcard here in L.A.

Then add Los Angeles to the equation. It may seem strange to say that this expansive city of millions can feel isolating, but it can and does. Everything is spread out here, including my friends. And what may be a short drive in distance can take forever thanks to the worst traffic in the country. Visits across town take planning. You can’t just drop in on someone. Add to that the fact everyone is busier these days making ends meet and managing life. Even my healthy friends are tired.

The daily management of CF and time spent doing treatments each day interferes with going out or having friends over. I laugh when I fill out CF “quality of life” surveys. I have a great life, but the question asking if CF gets in the way of my doing stuff makes me want to ram my head against a wall. I need an answer choice of “F**k yes, it gets in my way. Are you kidding?” Clearly, someone with CF didn’t write that question because they’d already know the answer is yes.  Okay, maybe not for all CFers. I don’t want to make that assumption. I hope it doesn’t for everyone. Just place a permanent check mark in my survey, please.

So, it’s Christmastime and I’m lucky. But I would have loved to have had a holiday party this season, which I say we’re going to do each year, but we didn’t yet again. Life with CF got in the way. The blood came after Thanksgiving and it was “all hands on deck” mode to maintain life as we know it. Now I’m on blood watch, as the streaks have returned and it’s anyone’s guess when my lung pops again. Can you say “fourth embolization coming up?”

Life is good. Yet, CF can make it feel like normal life is going on while I sit at the computer with a nebulizer in my mouth. That’s the “me time” I’d happily exchange for “hanging out with friends” time.

In the Cement Mixer

[adult language and anger warning]

It feels like someone, I mean CF, threw me in the back of an empty cement mixer and turned up the rotation speed to high. Then, as if that wasn’t enough, someone, I still mean CF, threw rocks in the mixer with me. The noise alone hurts my ears and the rocks cause bruising and welts. Then, as if that isn’t enough to cause pain, someone, you know who I mean, adds broken glass to the mixer. The glass cuts my skin and I start bleeding.

Life with CF - some days

Meanwhile, the cement mixer keeps turning and turning and the rocks keep banging against me and the sides of the barrel. The glass keeps cutting.

Then someone pours salt into the mixer, which makes my cuts from the glass burn.

All in all, this is what CF has felt like lately. First, the bleeding two months ago, two embolizations and 20 days in solitary. Fuck you, CF. Then more bleeding the day after Thanksgiving to show me who is really in charge – it’s not the doctors who perform embolizations – and eight more days in the hospital. Fuck you, CF. The hospital kicked me around too. A blown IV puffed up my left hand and I now have a two-inch vein made of rock. During the PICC line procedure my heart went nuts and a doctor actually had to come to the room. When someone was drawing blood, they hit a nerve and now I have nerve pain in my forearm. Then, one day out of the hospital I caught a virus and my white cell count shot up and set back my progress with the IVs. That’s the nutshell version.

Do I need to repeat tonight’s mantra? I think I do – Fuck you, CF, fuck you, because I’m still the luckiest guy in the world.