Category Archives: cystic fibrosis

Nose Bleed from Hell

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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.

Day 13 in Solitary, July 2012 – Fear of a Derailment

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My neighbor called me at 11:30 last night. He had a heated argument with our shared neighbor, someone we feel is on the verge of madness, if he’s not already there, or violence based on the tone, language and volume of the arguments. This is the same neighbor who said something to my wife last year, which led to my showdown with him and my request for him never to speak to my wife again. He hasn’t spoken to either of us since, and that’s a good thing.

It’s hard being locked up at moments like this, my wife and daughter alone. An alarm system, security cameras, and two dogs don’t seem like enough against a neighbor showing signs one might associate with insanity. And knowing he has a gun adds to the great unknown and my fear. And once again I want to move. There is something very scary about this guy. Talking to him is the same as shooting yourself in the foot. Pointless and painful.

I may be released Monday or Tuesday. It’s not soon enough for me. I can breathe out of the right side of my nose now. The blood is minimal. My lungs feel good. And even my stomach, which has caused me four moths of problems, may be responding to a new medicine, Prozac. Yes, they put me on it because of my stomach. I’m hoping I get the side benefit of the anti-anxiety part because I have to confess I’m really tired of anxiety. It has little value in my life.

If there is a bright spot to this visit, it’s the view from my room, despite the filthy window. I mentioned the fireworks last week. However, I also have great view of the mountains. And I can see and hear the trains that go by, which is a treat here in LA. I love trains though I would never ride on one because I have a fear of derailment. Part of that is because of the bad drivers here in LA who are always trying to cross the track at the last minute. Some mistime it. Some commit suicide. Everyone pays.

So, here I sit fearing a derailment, not of trains but of my neighbor. And I can’t wait to escape to the rented beach house in two weeks and a month away from our neighborhood. The question is, will a month be enough time away?

Dog on a chain

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The doctors Rotor Rootered my sinuses yesterday. Their choice of verbs, not mine. And boy what a fun night it led to, my sinuses running red non-stop, completely dammed, making breathing through my mouth my only option.

Yes, last night the bleeding never ended and no one was that concerned. Or not as much as I was. I’m glad I didn’t have the surgery as an outpatient, though I would have probably been given better instructions and advanced warning about the blood faucet. The picture I attached shows about a quarter of the bleeding – at most.

When the doctors rounded this morning they told me the bleeding was normal and weren’t concerned. Timing is everything, and information like that would have been valuable to know yesterday, when I spent an hour on the Internet looking up post-surgery FAQs. Thanks for that, my white-coated friends. Fun with a capital FU. (I take that back. Thanks for not drilling into my avocado-sized brain yesterday.)

Like all hospital visits, this one has delivered its fair share of mental trials, like sleeping with blocked nasal passages and the last-minute catches of incorrect Tobra doses two days in a row – score one for the nurse and one for me. Isn’t delivering correct doses of IV meds a core skill? Come on, people, it’s not like accidentally adding an extra patty to a Big Mac. Get it right before my kidneys burst into flames.

Thanks to the Universe for a book I read recently, Unbroken. It recounts the true story of Louis Zamperini and what he endured during WWII. Big baby that I am, I thought of his hardships in Japanese POW camps and my discomfort became manageable. There will be no feeling sorry for myself here. Period.

10 to 14 days in the hospital? Easy time.

I developed a Bejeweled habit. I sit here for hours shuffling gems around and making colorful rows, then igniting the explosive ones. Bang, pow, pop, everyone clap. Hand to my heart, I’m really embarrassed, especially because I’ve earned a badge in every category. I’m holding my fingers in an “L” shape to my head right now. Usually I spend my time in Hell much better, but I’m tired and this is day 10.

I’ve done some work here, which is a “no no.” I can’t help it. I have projects to manage and to keep moving forward, and doing so makes me feel I have some control over my life despite being locked up and attached to an IV pole most of the day, which makes me a perfect candidate to come back in my next life as a hound dog chained to a backyard tree all day.

Bark, bark, bark, bark. In “dog” that means, “losing one’s freedom to roam bites the big one.”

Hospital Communication Tales

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There are certain things an attractive, charming, intelligent woman should never say to a dying man locked up and trapped in a room the size of a walk-in closet. At the top of the list is, “if there is anything I can do for you, anything at all, please let me know.”

Yes, one of the few RTs I have ever liked said this to me the other day. And I had to do a double take, my first thought complete confusion. Did I miss something? What does that mean? Was there some hidden meaning to it?

That’s the problem with saying something like that to a guy. Or to me. I’m not bright enough to understand an ambiguous statement. Does it mean you’ll get in your car and drive to McDonalds for me, buy me two McGriddles, and hand feed them to me while I recline in the hospital bed?

I’ve obsessed over the statement for two days now. And I’ve kicked myself for not simply asking, “What do you mean by that?” I’m sure it would have been innocent and harmless, as I look like . . . and smell like . . . five days of hospital grime and fevers. But I am a curious person with a vivid imagination set loose by ambiguities.

But that wasn’t the strangest thing said to me this week. It doesn’t come close. Here’s my favorite.

A nurse conducted her assessment – blood pressure, temp, pulse ox. And then she said this: “Turn around please and let me listen to those pretty little lungs.”

Yes.

I can’t make up something like that. Well, I guess I could, but I’m not sure I’d want to because it’s kind of creepy. And that’s what I said to her: “That may be the creepiest thing anyone has ever said to me in the hospital.”

But I said it with a smile on my face. I love odd statements, especially here in the pits of Hell. And when I joked about calling the HR department, she did a double-take. “I’m joking,” I said. “It’s all good, my lungs weren’t offended, but they aren’t feeling very pretty today.”

Awkward silence. Not sure she’ll be saying that to another patient now after I batted it around verbally for five minutes. Too bad. I ruined it for others. Or did I? Or are only my lungs pretty? I’d like to think so.

I’m not sure why I speak to doctors who work the weekend shift. There’s really no point. They’re here to collect the $300 or $400 for entering the room, and only want to make sure you’re still breathing and not lying on the floor in a pool of your body fluids with the word “anything?” written in your own blood on the board that reads “Pain Goal.” (Mine is in the photo.)

So, even if I cut off two of my own fingers and glued them to my head like a devil on Sunday, the weekend doctor would take one look and say, “you may want to mention that to your doctor on Monday.”

That’s it. It’s been a rough two days of not feeling well. And that damn statement? “Anything” with emphasis? What did that mean?

Yes, I have problems. I know.

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The 4th of July from a Hospital Room

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In the haze of two days of fevers and chills that came on suddenly Monday and sent me to the Hospital California Tuesday, who knew the universe would throw me a bone and deliver one of the most amazing fireworks displays I’ve ever seen. But that’s exactly what it did and I’m forever grateful for the gift.

I was arguing with a nurse for Tylenol, which I’m still shaking my head about in disbelief. I have a feeling I should have just asked for a morphine drip and compromised with Tylenol. But who knew Tylenol was a such a hard drug to secure in a hospital. I had to answer a series of questions at the time to get it. Last time I checked it wasn’t being used to make meth, and I didn’t bring my portable meth lab with me. But it went something like this.

“You don’t have a fever.”

“I have the chills. That’s why I’m wrapped up in blankets.”

“Your temperature is low, not high.”

“Okay? And that means I can’t have Tylenol?”

“You have to have a fever.”

“I have a headache.”

“Let me check with the doctor.”

Now picture that conversation three times longer and 10 times more frustrating. I wish I were making it up. But when the nurse was off duty this morning, the first thing I did was take her picture out of the plastic wall frame, which is something new here at the Hospital California, and tear it into pieces and despose of it. I couldn’t take her staring at me like a horror-movie painting where the eyes follow you everywhere.

At that time, a bit angry, I got up and looked out the window to my view of East Los Angeles. Fireworks everywhere. Not one location, or two or three or four. Try 20 different locations. Bagdad on the eve of the invasion. I have never seen anything like it.

I’m sure not all of the fireworks shows were sanctioned or legal. Many of them were backyard shows that put to shame anything my family ever did when fireworks were legal. We fired off pop-bottle rockets and roman candles, and ran from black cats ready to blow. Nothing like what I witnessed as apartment complexes gave mini Disney-like shows. And they were beautiful. 180 degrees of exploding lights.

I watched, for a long time, waiting for it to end. But it went on and on. And finally I had go back to the bed. And every time I got up there were fireworks in the sky. Over two hours of it, though it got more scattered late into the night. Huge props to East LA. They know how to celebrate Independence Day!

Earlier, my wife and daughter came to visit with patriotic red velvet cupcakes in hand. They had poppers with them and tried to convince me not fire them off in the room. Fear not, I said, pulling the string, I’m an expert. Bang, a spark, the smell of gunpowder. A nice change from the normal chemical smell. No nurse came running. It takes more than that. Trust me, I know.

And later during the fireworks show, I fired another one off, though it was equally disappointing, as it spit out a wad of confetti and not the expected wide spray of it. Party Poopers would be a better name.

That was my 4th of July. And though I was spent it in a tiny hospital room, it was awesome – except the nurse part. Not so awesome. And I’ll be bringing my own Tylenol to the party next time – thank you very much.

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.

I’m looking through you, where did you go?

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Thanks to the Beatles for the title of this post. I can’t say for sure if I’ll finish writing it, though if you’re reading it now it’s a good sign I did.

You see, I’ve written – or started to write – many posts over the past month, only to let them live out their lives with the scarlet D on them for “draft.” Yes, I’m having trouble getting motivated to write posts and anything else requiring effort in my life. I caught a bad case of “disconnection.” And maybe that’s a fancy way of saying I’ve been a lazy sod.

So, I’ve started a lot of posts. And each of them sounded great in my head before the act of typing away at the keyboard. But my fingers touch the keys and I lose the inertia to continue. A pin pops my motivation balloon and that usually leads to saving the draft and escaping to an episode of Mad Men.

But I’ve run out of episodes, having caught up to the current season. This means I have lost the perfect distraction when posts go south. Though I’m not sure dreaming I’m Don Draper is a healthy thing either when I’m feeling dissatisfied with life, which to some degree I am these days.

Looking forward to living in the sand this summer. © Dmytro Smaglov - Fotolia.com

There is, however, some good news: We escaped to Ventura for a couple of days last week and found a beach house to rent for a month this summer (deposit given). If I had a bucket list, this would be in the top five things to do in my life. The three of us are pretty excited about the thought of beach life for a month and living a couple hundred feet from the sand and ocean. No loading the car up with food, dogs, towels, and a cooler, then driving 35 minutes. Nope. This summer will be opening a door with two dogs on leashes in tow and arriving at the beach in less than a minute. Yes, this may define “heaven” for me.

And I must say that having things to look forward to makes a big difference in my life. And our upcoming time at the beach is just enough to help me wade through the muck of mundane days, doctor appointments, and the uncertainty of life. I think of the beach air and my life feels a little bit better and easier to manage.

[p.s. I owe my friends who’ve left comments a huge apology for not replying. I’ve been consuming more than creating for the past month. Thank you for leaving them. I have read all of them, and appreciate your words and thoughts.]