Tag Archives: cystic fibrosis

A bad week sends me to the ER

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Last week picked me up like a rag doll and slapped me against the ground hard.

It started with neighbor problems during Memorial Day weekend that led to emails and conversations with the police during the week. Then our yellow lab tore her ACL and went in for a $5,000 surgery for her knee. A rough week at work rocked my equilibrium in the way only work can do, and Saturday morning my heart lost its rhythm and off to the emergency room I went.

Home sweet home.

That’s the executive summary. Here’s the full scoop.

Our neighbor problems continue. Based on my complaint and other neighbors’ complaints, the police visited the parents to let them know the neighborhood was stressed about their daughter. I’m not sure how much it helped. The email from the officer stated the parents understood, but were “not appreciative of all the complaints.”

If we were renting our house, we’d be gone. Owning a home is overrated. My advice is to own a mobile home instead. I wish we did.

Now I spend every night looking at Realtor.com and every available house in our price range. No luck. There’s limited inventory these days. And something about having to move because of uncaring neighbors really upsets me. We may have to move, but it’s not going to be a fast process.

Our six-year-old lab hurt her knee last year. We went to the vet and he took x-rays. He saw a small speck, but felt it was nothing because she was walking okay. But our dog grew more bothered by the knee, so we went back and he gave us the name of a specialist, who diagnosed a torn ACL. In she went in for surgery the very next day. And now our bank account is light almost 5K. We love our dogs in this family. Or I should say we love the yellow lab because we got her when my daughter turned four. She and my daughter have a bond. I can’t explain it. It exists. And my wife loves the dog too.

I may work for one of the top 100 best companies to work for, but that doesn’t mean every day rains gummi bears and I spend half my day at the beach. The term “work/life balance” makes us laugh daily when we talk about the workload. I am going to write more about this in a future post. All I know is that both my wife and I work for large companies and I’m thinking it’s time they started hiring more people to do the work.

Welcome to the ER.

All of this led to my heart going into Atrial Fibrillation Saturday morning and an ER visit. It’s interesting because I thought a heart with no steady rhythm would be a big deal when I got there. It felt like a big deal to me. But despite the my pulse jumping from 60 to 160 and back again, they didn’t exactly rush to help me. I guess if I’d said I was having chest pain, first class service would’ve kicked in. It felt that serious to me. Eventually, they got around to doing something. They gave me a shot of ativan, an aspirin, and a large IV bag of fluid and my normal rhythm returned. But I wonder which came first, the panic attack or the crazy heart rate? I’ll never know.

Now I have to go see a psychiatrist. I know I have a problem with anxiety and need to manage it better than taking an occasional Xanax Skittle. The A Fib episode gave me a scare. I don’t want to go through it again.

And I should add this. I’ve had time to think about the week and what caused the stress. Yes, all of the above happened. And all of the above contributed to the problem. However, it was really the fear of what might happen in the future that pushed me over the edge. What if the neighbor retaliates and hurts my wife or daughter? What if I can’t negotiate my way through the politics of this project? What if I lose my job? My insurance? It really comes down to worrying about the unknown.

I don’t believe in God, but that doesn’t mean I don’t speak to her sometimes as if she existed. And I asked her for a sign. Something to show me I should continue and not give up. To continue to put up with the challenges of life. And she delivered one of my favorite songs, “Blackbird.” Interesting choice. I guess it’s like a dream – it’s my interpretation that matters most, not the dream or the song. And though I thought about not mentioning this part because it feels embarrassing, I’m leaving it in. It is what it is. And it happened.

And we want to become adults because?

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It would have been nice had someone explained to me when I was young how difficult it is to be an adult. It’s not a cakewalk. Nor is every day a day at the beach. I probably wouldn’t have listened, or cared, but it still would have been nice. All those milestones we dream of as children, 16, 18, and 21, blow by. Then we become adults and can do anything we want, including wishing we were 16 again, but smarter.

Okay, moaning over. It’s just one of those days. Let me explain.

So many questions, so little time. © kbuntu – Fotolia.com

I spent two days writing a post about what happened over Memorial Day weekend with a neighbor. I would love to publish it, but I don’t know if I can make it plain enough to avoid all legal scrutiny and not get in hot water. In a nutshell, a neighbor who has caused the neighborhood and my family great stress went to jail this weekend. I and another neighbor followed the instructions of the police the last time they were here: call if she shows up again. We just wanted her out of the neighborhood. The going to jail part was a surprise and not intended. Now I know why some people don’t get involved. It’s easier and requires less effort and stress.

And if you do get involved, it’s easy to muck it up and experience more stress (I know this firsthand).

I’ve been on the phone with a lawyer about my options to sue since then, and I’ve spoken to a police officer about everything happening in the neighborhood for the past year. My wife and I have had stressful conversations about the situation. Unfortunately, there’s no manual on how to protect your family from people with drug habits.

But there should be.

I went to clinic today and my PFTs haven’t gone back to baseline. Not looking good. So, maybe it’s time for IVs to see if we can nudge them back.

When the nurse was reviewing my records, the conversation went like this: Have you made an appointment with the sinus doctor? No. Have you scheduled a sleep study? No. Have you scheduled a bone scan? No. An oral glucose test? No. And so on.

Working 50 hours a week makes it difficult to spend my weeks enduring medical tests.

A new doctor untrained in the mysteries of CF walked in and surprised me. I’m picky about my doctors and my time. I knew in the initial 30 seconds based on the way she entered, spoke, her mannerisms, and plopping herself on the first chair she could find that I had nothing to say to her. And I told her that, then asked for the regular doc. Nothing personal, I said, as she left. One of the regular doctors I like entered the room and it rained happiness and Skittles. I only had to use a third of the words and effort with her compared to the doctor I booted.

A similar situation happened with a temporary member of the staff. I answered her questions as quickly as I could and got her out of the room as fast as possible. But the visit wore me out, as the longer I’m there, the more the work feels like it’s piling up.

So, all of this and more have added up to remind me why some must turn to drugs in life. The future overwhelms. How much of what we worry about will or won’t happen? I wish I knew.

Parody of Mad Libs – Cystic Fibrosis Version

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

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

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

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

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

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

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

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

Stay healthy, my wonderful _______(plural noun).

One more item checked off my bucket list: Acupuncture

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I did it. I finally did it. Say hello to the human pin cushion. I let a doctor stab needles in me from head to ankle. One between the eyes, a few on the side of my face, and more down my arms and legs.

The DIY acupuncture kit from Home Depot is cheaper and equally effective.

And the experience wasn’t free of pain either. The needles in one ankle and one elbow smarted. But it was nothing compared to the pain of an IV started by a nurse fresh from nursing school.

The needles were easy. Having to lie flat on the exam table for 30 minutes  – not so easy or fun. I don’t like being horizontal and unable to move around, and 30 minutes of not being productive was torture – until the table started spinning and I had this strange floating feeling. That was a bonus.

But I can’t say I really felt any different during the procedure or immediately after it. I was a little disappointed and didn’t think I would return for another session.

And then I got home.

Yes. Home. And I started feeling . . . strange. My wife’s green eyes seemed greener and her hair darker, with more texture, richer. She looked amazing.

Luckily, my daughter was busy Skyping with a friend and too busy to notice her parents sneaking off to another room. I grabbed my measuring tape as my alibi, just in case, as we may redo the bedrooms when we remodel the kitchen.

[CUT TO: black and white movie from the 50s and image of train going through a tunnel, followed by fireworks and rockets blasting off.]

I have my moments. I don’t have many of them, but I do have them.

Then the rest of the day I felt high. And if someone had offered me another session of acupuncture, I would have jumped at the chance. In fact, I felt like a junky needing a fix.

Euphoric? Is that the correct word?

I’ll be returning for another treatment. I can’t really explain what happened during the first one, but something did. And it’s worth exploring to see if there’s more magic in those needles – or if the doctor is dipping them in a solution made of something very unique and illegal in most countries.

Either way, one more item off my list – with a bonus experience. It doesn’t get better than that. I heart acupuncture.

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.

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.