Category Archives: cystic fibrosis

Odds and ends the week after Easter 2012

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I won a two-week stay of execution last week when the Cipro worked and bumped up my lung function. Not back to normal, but moving in the right direction – up. At least now I get to enjoy spring break with my daughter and wife. We didn’t make big vacation plans because it’s hard to make them when you’re not sure if you’re hospital bound or not.

We do, however, have something to look forward to this summer: We’re going to rent a beach house in Oxnard or Ventura for a month. We want to remodel the kitchen and bedrooms and it will be better  if we move out during the dust storm of construction. So I thought, where would I want to move out to? The beach. Yes, number one answer. And I thought why not, life is short and we don’t take many vacations. So, my wife and I will work part of the time and take vacation part of the time. It feels like something the rich and famous do during the summers.

A month of this will be very nice indeed. © Yahya Idiz - Fotolia.com

I return to the cancer hospital next week for round two of too many people looking at my ass. I feel like I should be doing lunges every day to pump up for the big reveal. I am, however, working on my jokes for the doctor. What do you call a colorectal surgeon with a scope up your ass? Three martinis and one llama short of a good time. I’m still working on the punch line. I can only imagine how well that joke will go over. Though, it wouldn’t be any worse than the ones I told last time.

I wish they had a medical procedure to make me look like Don Draper (Jon Hamm). It would be nice to be a genetic wonder, not a genetic failure.

I watched the first two seasons of Mad Men. Thanks, OCD. Great show, though it makes me feel like I’m having an asthma attack when I see all of the cigarette smoke. And it reminds me of my smoking parents, their fondue parties, and my father’s drinking. Even now I have to laugh when I think of my mother smoking in the Pinto station wagon as we drove places. She did her best to blow the smoke out the window so I wouldn’t inhale it. I know some think the 60s were a glamorous time, but I’m not sure I see it that way. I’m not sure it was our brightest generation. I’m probably wrong. My memories have the feel and look of faded Polaroids. There is something cool about the photo, but the memory when thought about deeply, well, not so cool.

Until next time.

Caillot de sang sur mon derriere

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The Universe tossed me a bone this week.

Hello, Universe, what do you have planned for my backside today?

And yet, at the same time, it delivered another painful lesson to remind me how stupid I am and that I am here for its own amusement.

I visited the cancer hospital, which was an experience in itself and humbling, and met with the colorectal surgeon to fix my rectal prolapse, or what two doctors agreed was a rectal prolapse – first the ER doctor, then my gut doctor, whom I wish had taken a closer look. Maybe he’s dealt with one too many assholes, me, to deal with another.

So, with the opinion of two doctors, I felt confident to make the following statement to the surgeon’s young, highly-attractive doctor in training: “I diagnosed it myself before going to the ER.”

Yes, I looked right into her brown eyes and I said it, selling it with confidence and pride. I should have added: “Give me a mirror and scalpel, hot stuff, and watch me repair it right now. Yes, that’s how awesome and brilliant I am.”

Hello, I’m the Universe. I love it when this idiot gets overconfident. Nothing like a good backhand to the head to teach him a lesson. Wait, it’s about to happen. 

After five minutes of talking about my medical history, it was off to the exam room and getting on my knees and bending over a custom-made, tilting exam table for having your rear-end examined or praying. Or both.

Now I have to mention at this point, as a reminder, as if you needed one, I’m a polarizing person in medical situations that some might consider to be stressful. People either think I’m Mr. Funny Guy dealing with a life of doctors, hospitals, and medical tests, or, on the flip side, the biggest jerk in the world.

Door number two, please.

Many doctors find Home Depot’s tools useful for surgical procedures. And they include a 2-year warranty.

Is there a more appropriate place than an operating or exam room for a joke to lighten the mood? I think not.

Like when the doctor tipped the table forward and my ass raised high in the air for the crammed, standing-room-only crowd of nurses: “Where can I get one of these for my bedroom?”

Dead silence.

Or, how about this classic to the doctor after the scope went in and out and I pulled up my shorts up and faced him: “Well, that happened.” [Confused look by the doctor.] So, I tried to explain the joke: “That’s what Alec Baldwin said in the movie, State and Main, after he drove drunk, crashed with an underage girl in the car, and sent her walking home with a bad injury, then left the scene of the accident himself. ‘Well, that happened.'”

Clearly, I didn’t deliver the line correctly. More silence from the crowd.

This is the universe again. You are such a prick. You never learn. Time for your self-esteem buster. 

“You don’t have a prolapse,” said the doctor.

“What did you say?”

“You have a blood clot, not a prolapse”

“Do I need surgery for that?”

“No.”

Yes, my dear reader, I’ve been walking around for three days thinking I had a backside in need of surgical repair. Perhaps, a symptom of something worse, the C word. But at that moment, happiness flooded my brain and I could have kissed a few of the onlookers (you know who you are).

However, it occurred to me that two doctors had looked at my rump, “my lovely manly rump” (hey, a similar line was good enough for the Black Peas), and confirmed the diagnosis.

Or had I, super-idiot-pretend-doctor, planted the seed in their minds and they followed along?

And then I thought of my wife following the ER doctor’s directions and trying to push it back in place two times a day for the past three days, which according to the surgeon was about the worse thing you could do for it other than stabbing it with a rusty knife.

Hey, it’s an Edvard Munch painting. Oops, it’s just you in looking in the mirror.

Put me back on the bench and whip me for being too stupid to walk the planet.

Agreed. “I diagnosed it myself.” That’s rich. You’re not very bright. That does make me laugh and it’s not easy to make me, the Universe, laugh. Good one. 

But the best, most deflating moment came when I walked out of the exam room and looked down the hall, waved to the doctor and his two assistants, only to have them not notice because they were standing around laughing.

By the way, recounting this story now makes me feel icky inside. It’s one thing to be an idiot, it’s another to know you are and not be able to do anything about it. [hands on head; head hitting the desk over and over. Thud.]

I am like watching a train full of circus clowns derail and explode into a mushroom cloud of fire, flesh, and flaming red rubber noses falling to earth like meteors.

So, it’s two baths a day, four more days of suppositories, some ice packs, and a return visit in two weeks for my next bombing performance. I can’t wait.

Well, that happened.

Yes. Yes it did.

True love is proven in the most difficult of situations

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I have the greatest wife in the world and a hernia in my ass.

A little salt, a pinch of sugar, and I'll be ready for Thanksgiving. (Sorry, I couldn't resist. I have problems.) © Olga Lyubkin - Fotolia.com

Those are the facts. And I’m happy about the first one and upset about the second.

The official term is Rectal Prolapse. And it’s as bad as it sounds. Perhaps, worse.

Saturday the cipro did a number on my stomach and digestion, and something tore loose back there. I thought it was a hemorrhoid that hurt really bad. But the pain woke me up around 5 a.m. Sunday morning and I was walking gingerly into the ER around 10 a.m. with an 8 out of 10 on the pain scale.

A little luck went my way with a short wait and a very nice doctor who worked the rupture back into place. Unfortunately, it didn’t stay and popped back out and a surgeon was called. No immediate surgery due to the fact it could be put back in place.

“Follow up with your doctor on Monday. Now run along little cow poke. You’ll get the hang of riding horses one day.”

For the past two days, I’ve had to drop trou and have my wife manipulate it back in place because it’s not as easy to do it yourself as the ER doc said, “just use two fingers and push it back in place.” That would be possible if I worked at Cirque du Soleil and could twist my lower body around 180 degrees. But I’m made of wood and might break if I tried.

There is also the steroidal magic bullet I insert, which I do in front of my wife, as asking for privacy at this point seems, well, pointless. After the final application of a salt and sugar paste to reduce swelling and season me properly, I place my ass in the 350-degree oven for a nice crusty glaze*.

Oh, I almost forgot one final step. Gauze is inserted between the two hemispheres and both are taped together, tight, for maximum style points in my cargo shorts.

I must say I’ve been pretty mellow about this new adventure. It has a “this isn’t really happening, is it?” quality about it.

“No, I really don’t have to stand and clench my cheeks before every cough.”

“It’s a good thing this is just a bad dream and I’ll wake soon.”

But it’s real. And yet, at the same time, it’s proof I am the luckiest man in the world because I married a woman with courage for the both of us and gentle hands.

When I’m laying on my side with my back toward her, I tell her that I would do the same for her if our roles were reversed. And I also tell her that I’m glad it’s me going through this and not her.

And I mean it.

***

[*The oven part is a joke. Do not attempt unless you want to be dinner or are a complete idiot.]

If given the choice between having low PFTs or getting hit in the groin with a baseball bat, I’d choose . . .

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. . . maple over aluminum.

This will only hurt for the rest of your life.

Yes, even if it were swung by Sammy Sosa in his steroid-induced prime when he blasted home runs over the walls of baseball parks around the country.

Batter, batter, swing. Oh, that hurts. Fill my diaper with ice again, please, Honey Bunny. 

But it still wouldn’t hurt as much as low PFTs and poor lung function.

After two weeks of prednisone highs, lows, and mediums, and every shade of gray, the moment of truth came today when I blew into the tube for what felt like the millionth time, but did not ring the bell and did not win the giant stuffed panda for my honey.

It’s such a sickening feeling to blow like Popeye, rush around to look at the numbers on the computer screen and lose your breath again. Batter, batter, swing. Oh, that hurts. Sammy, how much of that stuff did you inject?

But I didn’t go to jail.

No, nope. I did not.

My small airways tossed me a “get out of jail free” card.

Yes, they did, showing minor improvement, which was enough to give the doctor, ever the optimist, hope I might be improving after starting the Cayston this week.

And in the surprise of the week, he would not admit me. No matter how I much I tried to convince him (another way of saying “beg”), he would not fall prey to my Jedi mind tricks, or a $20 bill, which always puts a smile on the valet’s face, but failed to sway a man with M.D. in his title.

However, we did reach a compromise that I would start Cipro to see if it could team up with Cayston for a total ass-kicking party of the germ invaders in my lungs.

Next week, I’ll return and blow with all of my might until my face bulges bullfighter red and every vein in my neck turns to rope.

And if by some miracle, my lung function should return, I’ll be so thrilled I’ll whistle for my magic rainbow unicorn, Peppercorn, and ride her to the mystical and distant land of McGriddleVille.

And should my numbers not take a magic leap up, I shall pick up the PFT laptop like a 60s rockstar might pick up a piece of hotel furniture and let it fly, teaching it the greatest lesson of all: if you have nothing nice to say, lie.

3, 3, 3, 2, 2, 2, 1, 1, 1, blast off to worlds unknown

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Well that happened. 9 days of oral steroids tapering to 1/2 a tablet for another 10 more days.

And what a fun time it was riding the prednisone rocket.

If this were a Monty Python film, the line would be, "It's just a harmless little white pill, isn't it?" Photo: Creative Commons

“Please make sure your seatbelt is fastened, your seat is an upright position, and your head is securely attached.” 

My favorite part was the return of coughing up blood. Nothing more fun than that. I’d really missed it.

But there were other exciting parts too, like the headaches, panic attacks, and anger, especially during the return to Earth’s gravity and tapering doses. Or what I like to call, the “leaving the comfort of zero-gravity” stage.

“The USS Prednisone has reached maximum velocity. Please hang onto your drinks and nuts. Or pour your drinks on your nuts.”

And then there was the detour to my local CVS to measure my blood pressure when my face and eyes felt like they were going to explode. They didn’t. But I did take a day trip to the Cardiology planet with my heart lacking a clear and steady beat (Would the meth-head playing the drum kit kindly look up the word “rhythm”)

Oh, yeah, prednisone can increase blood pressure. Another bonus.

Did this medicine help me at all? I have no idea. All I can say is that I’ve felt discombobulated all week while on it, and have spent a great amount of time at doctors and looking up medical information.

Fortunately, the blood is just about gone. After 30 years of coughing it up, I have not yet mastered the skill of dealing with it. When it happens, it’s the scene you see in the movies when the camera zooms right up to the main character’s face – too close in fact, as you can see every pore in his face – and the background starts spinning around.

“When the rocket ship stops free-falling, feel free to throw up at that time. For the comfort of your fellow passengers, please swallow it until landing. Your pilot and those who have to clean it up thank you.” 

That was my trip. I know it’s not finished yet, but the worst is over. Isn’t it?

We’ll see. There’s still this week’s clinic appointment and a possible hospital stay if my PFTs aren’t improved. Let’s hope the prednisone helped and all of this was worth it.

Some days even the luckiest man in the world feels unlucky

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No doubt in my mind I’m the luckiest man in the world. I believe it. However, nothing rips my luck from me, rolls it up into a little ball and lights it on fire in front of my face like a CF clinic appointment with low PFTs.

I can eat a steak dinner in front of the TV while an open-heart surgery is on, which grosses my wife out. However, there is something really creepy about looking at this plastic head model with half its skull and face missing. Me no likely. Bad dreams for me and my imaginary friends now. Creative Commons.

Kick me in the groin, stomp on my back, rub my face in the dirt, piss on me like a dog, CF

Yes, after finishing IVs a mere 6 weeks ago and much improved PFTs in the hospital during the IVs, my PFTs were way down. Arghhhhhhhhh, someone stick a Drano IV in my neck and end this misery.

It doesn’t make sense – both my doctor and I thought this at the same time when light-bulbs appeared over our heads.

Then we talked about the problems I’m having with allergies and my sinuses. He thinks the post-nasal drip is draining into my lungs at night. And he heard wheezing in my right lung, which is the side I sleep on at an raised angle.

Then after a look at last year’s CT scan of my head, which showed dozens of loose screws, broken glass, two fat gerbils smoking cigarettes next to a rusty training wheel, rocks of all colors, shapes and sizes, and McGriddle-shaped clouds, he told me it was time for sinus surgery.

And like a good coach, he told me to hit the saline rinses and dual nasal sprays.

And, as a bonus, I got an Rx for oral steroids for only the third time in my life. Now, the three readers of my blog may remember that when they gave them to me in the hospital in 2010, I experienced hallucinations.

Oh, happy days, more imaginary friends to meet the imaginary friends I already have when I’m not downing prednisone.

It’s about to be party time in my head. See you there.

Yours truly,

Still the luckiest man in the world

No-blogging excuses and playing tennis with Davy Jones to raise money for cystic fibrosis

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It’s been awhile since my last post. I wish I had a good excuse. I don’t. But I do have a list of things that got in the way of my blogging:

Check out the signature. I've held on to this for many years. "Keep on keeping on." (Until you can't.)

More neighbor problems. I tried to write about this, but I don’t like thinking about it. The 30+ year-old daughter of a neighbor was purposely locked out of her parents’ house and roamed the neighborhood begging for tampons, food, and water. When she said “my parents are so controlling,” it took all of my strength not to say “move out then, you’re not 13.” This is the same person who was taken away by 8 or 9 police officers and 2 paramedics this summer. “Spiraling downward” sounds accurate. Worse, she’s intruding on our lives as she reaches the bottom.

Remodel the kitchen or move? Is it better to endure a kitchen remodel or buy a new house with a finished kitchen? We’ve been asking this question and it’s a eater of time when you spend a month asking it. The answer? Don’t know yet. We’re still asking the question, but our current neighbors are making the decision to move the more compelling choice.

Work. Is an explanation on this one needed?

Forza 4 on Xbox. I’ve spent way too many hours in front of the TV practicing this game. And all in the quest to beat my British friend @onlyz after he kicked my arse in a head to head match. You could also title this paragraph, “the downside of OCD.” However, I will be writing a post soon about Forza 4 online racing and some of the people playing it. Not always a pretty portrait of humanity when someone speaks their mind online. Ugly, ugly, ugly. More to come, or not. Maybe I just said what I need to say about it. We’ll see.

Yes, that is me. I remember the blonde hair. Not sure about my haircut, or lack of one. Wish my parents has forced me into a barber's chair.

I played tennis with Davy Jones many years ago. Yes, I did. It was a charity tennis tournament for cystic fibrosis and I was 12. Davy Jones was one of the guest celebrities. And I got to play tennis with him and against him. After the tournament finished, he sent me a signed Monkees album and a collection of Harry Nilsson albums, with one signed to me because I had mentioned I was a fan of his. It was such nice gesture and I’ve never forgotten what he did for me.

I do wonder if any of us those many years ago would have guessed I would still be alive now? Not I for one.

Well, thanks to Davy Jones and everyone else fighting CF, celebrity or not, I am.

RIP, Mr. Jones.

Coming up for air

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[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

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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?)

The sadness of gravity

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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.