Tag Archives: Health care

Addendum to yesterday’s post

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If I could really shape shift, I would look like Don Draper, but a lot happier.

If I could really shape shift, I would look like Don Draper, but a lot happier.

INT. Today’s CF Clinic appointment – morning

Nurse: Hi.

Unknown (wearing a yellow hospital mask): Hello.

Nurse: You’re looking good. So tan.

Unknown: Thank you.

Nurse: You’re not feeling well, huh?

Unknown: Nope.

Nurse pauses, looks at Unknown again.

Nurse: You look good. Your hair looks different, short. It’s nice.

Unknown: Thanks.

Nurse: I must have caught you after a haircut, huh?

Unknown: Yep

Nurses takes another look at Unknown.

Nurse: Are those new glasses?

Unknown: Yep.

Nurse: They look good. Very stylish.

Unknown: Thank you.

Yes, after writing yesterday’s post, this happened. A gift from the blogging gods!

I’m not sure I nailed the exact quotes, but I’m close. The nurse is super nice. And everything she said was complimentary. I could, however, detect that there was something about my appearance she couldn’t put her finger on. She just kept looking at me over and over. Kind of like I was . . . wait for it . . . a person she didn’t recognize. I am, after all, a master shape shifter.

And then I blew the lowest PFT I’ve ever blown in my life. HUGE FAIL. Tomorrow I go to jail for a dose of IV antibiotics and the most hated drug I’ve ever taken – oral steroids. Hello, hallucinations. Soon, I’ll really believe I can shape shift.

Happy, happy, joy, joy, it’s off to jail I go, where I’ll huff and I’ll puff and I’ll blow . . . nothing down.

Frozen Shoulder on a Stick

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No frozen shoulder here.

Not just a shoulder, the “amazing” shoulder. Do you have amazing shoulders? How about lungs? I’d rather have amazing lungs than amazing shoulders. Just would, that’s all.

What’s the lifetime world record for number of doctor’s visits and medical tests?

I must be getting close to it. At least it feels like I am.

Last two weeks: CF clinic, ENT doctor, dentist, lung scan, ortho specialist. And the sleep study and O2D2 at night before that.

Results: I have hearing loss thanks to the endless doses of IV Tobramycin I’ve sucked down, and, as a bonus, a frozen shoulder thanks to who knows what.

I didn’t need a test to tell me I can’t hear certain high sounds anymore. And my shoulder still moves and isn’t technically “frozen,” but it sparks a ton if I move it the wrong way.

But I did not like the lung scan, Sam I am.
I did not like it at all with green eggs and ham. 

“Lie down, please. Take the paper bag off your head.” Those words sound much better when they come from my wife.

The super-efficient nurse placed a mask on my face, told me to hold it tight and not let air escape, then injected something into the mask and told me to take a deep breath and hold it for 10 seconds. This process reminded me of a scene in a movie with two drug addicts getting high. Could I have the colitas spray next time, please, nurse?

I didn’t ask what she made me inhale. I didn’t want to know, as my new “living day to day” attitude gives me “who gives a shit” powers. But I did panic because I couldn’t breathe normally, and I allowed a little air to slip out of the mask.

Why is everyone running away? Damn, Nurse, you weren’t joking about holding the mask tight.

Next came the IV and this nurse nailed it. Wham, bam, thank you, ma’am – it is possible to start an IV without it feeling like someone hammered a nail into my arm.

She injected another substance I had no desire to know the name or chemical composition of. Then, unlike a CT scan where you’re inserted into the oven to be cooked, the oven came to me, surrounding with me with a metal plates to take pictures of my air bags, changing positions and moving around me several times.

This is the worst photo ever. It's the shot I took as the machine was passing over me. It was everything I could do to get my iPod out and snap the picture.

This is the worst photo ever. It’s the shot I took as the machine was passing over me. It was everything I could do to get my iPod out and snap the picture.

At the ENT, I got the bad news about my hearing. And the ringing in my ears? Here to stay thanks to my feeble brain’s interpretation of the damage.

There was a bright side to the visit. We spoke about our kids – he has two very young ones – and I mentioned how in a German hospital years ago I hoped I would live to see my daughter turn 5. That would be great, I thought. If I can just make it to see her turn five.

Where did the time go? I asked. It’s a blink. One day she rode on my shoulders, the next she was 11. Now I want to live to see her graduate high school, which is odd because it was my mother’s goal to see me live to graduate high school.

[The following sentence is meant to be read in a crusty old British accent]: Twist of fate? Perhaps. Perhaps not, my good man. Tea, anyone?

Then came a long, strange pause as I waited for the doctor to shove the scope in my nose. Pause. Wait for it. More of a pause. Pause. Wait for it. Is the machine not working? Okay, he’s moving. He’s awake.

“Sorry, I was getting teary-eyed,” the doctor said.

What? That’s strange. And he’s serious, not sarcastic. Hmm, that doesn’t happen every day. Very unusual.

Some doctors are human. At least the good ones are. And I found one.

It’s a good day when that happens. A good day, indeed.

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.

Caught in the medical riptide

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I’m back in heaving ocean waters again. A sea full of medical tests and ailments. And it’s going to be awhile before I can escape its grasp and swim to shore.

It started with the blood clot in my neck and the twice-a-day “shots  from hell” to the gut. Now I have two hematomas on my fat-covered six-pack – large bruises with nodules of what I guess is hardening blood in the middle. Kind of like chocolate candies with almond centers, not that I’ll ever eat those again now.

There are a million rocks under that whipped cream

Then last week on a vacation day, the ocean attacked me by throwing a large stone at my foot. A trail of cuts runs up my right foot to a large bruise near my ankle bone.

I was standing in a field of rocks with my daughter searching for cool looking specimens to take home when a foamy wave shot up the beach, rolled a nice big rock and beaned my foot. It hurt, but I was fine until I went bowling Sunday.

That’s right, bowling.

Who’s bright idea was that? Oh, yeah, mine.

So, we went, Sunday, bowling. And on the second ball I rolled, I pulled a muscle in my ass and back. Embarrassment does come with an injury like that, but I can brag that I played through the pain and bowled three games without being able to bend over to roll the ball. I just sort of had to throw it down the alley to manage the pain. (Grunt, toss, thud, sound of pins falling.)

Clearly, I was not in bowling shape

But we still had fun, with my daughter providing the highlight by leaning over the fan on the ball return and putting the gate down as my ball was heading down the lane. CLANK. Then, as we were figuring out what black magic prevented me from picking up the spare, my ball rolled all the way back and I picked it up as if nothing happened. Good times.

Until I took my shoe off.

Something about the bowling shoe irritated the bruise and caused a golf ball sized hematoma on my ankle, confirmed by the ortho Dr. yesterday.

By bedtime, my foot looks like it belongs to someone you’d see on Jerry Springer who hasn’t left the house for five years because he enjoyed home delivery of ten large Domino’s pizzas each day and crushed his scale north of a 1,000 lbs.

But that wasn’t the best part of the appointment with the ortho. I received a bonus gift during my visit, which is so often the case with visits to the doctor. I choose door 3, but they surprised me with door 2. He told me there is calcification in the artery? Wasn’t clear on that, but he said he normally only sees it in much older patients and I need to see my heart doctor about it.

In CF years, I’m 132. Does that count?

Now I have to get a stress echo or cardiac cath, the latter makes me sweat and want to throw up. Not big on caths of any kind, especially on a blood thinner.

Caption says it all

Oh, and I have the tooth that needs to be pulled asap because the gum is bubbling again, but which I keep putting off because I need to get an oral surgeon to do it thanks to the blood thinner.

Despite all of this, I’m doing my best to power through it, have the best summer possible, and keep swimming with the pain and riptide until the tide turns and I can swim to shore. This is about endurance and mental toughness right now – both of which I often lack.

Or I’ve reached the point in the movie where the lead character has lost it and is waving his gun at the monster in the fog and screaming, “come on, if you’re going to kill me, do it. DO IT. What are you waiting for? Come and get me.”

The next sound you hear will be me firing my remaining shots into the fog.

I am Jenga Man

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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.

When life attacks

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I spent yesterday afternoon in the ER – as a visitor. My wife went there because she had the panic attack of all panic attacks and her blood pressure skyrocketed. I wished I could have changed places with her.

I felt terrible that life had overflowed her bucket with lice, my hemoptysis, her crazy workload, and upcoming trip. I realized I was seeing a version of me when I go through anxiety attacks. It scared me because she’s been bulletproof up till now.

What’s kind of nutty is that I had to take a Xanax when she went to the ER because I had a panic attack. It was amusing when the doctor gave her a dose, too, as I was there to drive her home. I smiled because my little pill had kicked in for my pharmaceutical joy ride to the heavens. Sure, Doc, I’ll drive her home. My rocket ship is parked outside and ready to blast off. Maybe we’ll stop at a bar on Mars and knock down a couple of Xanax chasers.

It’s amazing how life and work become so overwhelming and hard to keep up with some days. My sincere thanks to the corporations for ratcheting up worker productivity the last few years. Companies may be right that high productivity is profitable, but they fail to factor in the cost of increased health care expenses. Even my healthy co-workers have problems dealing with the load. Some of them make secret ER visits and numerous doctor visits for their possible stress-related illnesses.

Tomorrow, my wife leaves on a business trip.  I want her to go because it will be good for her. But I don’t want her to go because if I cough up a lot of blood, it’s going to be one crazy time taking care of my daughter. She’ll have to stay with friends or hang out with me in the hospital. “Daddy, let’s go over your symptoms again. From what I can tell you’re experiencing what’s known as a panic attack. Now get over it so I can go back to playing Pokemon?” Okay, I will for you, bossy little princess.

The next three days are going to be like walking around with wet dynamite in my chest, hoping I don’t jostle it. Wish me luck.

Free healthcare – in prison

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Medical parole: Hospitalized prisoners costing California taxpayers millions – latimes.com.

I got excited when I read the above LA Times article about healthcare in prison. Here I thought that one day I’d have to kill myself when my insurance runs out, but now there’s a possible light at the end of the tunnel – free healthcare in prison.

Of course, I’ll have to commit some kind of crime to get there, and the healthcare in prison doesn’t sound top-notch. However, that seems inconsequential when it comes to staying alive and getting to see my daughter grow up, though it will be on scheduled and supervised visits at the prison. Will I get to keep my iPad? Probably not.

I think I’ll rob a bank. I can pretend to have a gun in my jacket and ask the teller for unmarked bills and no dye packs. See, I’ve watched enough movies to nail it. Then, I’ll just stand outside the bank and wait for the police to arrest me. Life is simple after all. There’s always a silver lining.

Then I think of the honest, hardworking, taxpaying CF individuals and families on GHPP here in California who are barely holding on to it with the state budget cuts. California will provide medical care to people who have committed the most horrific crimes but cut other programs to the bone. Hmm, something about that bothers me – a lot.

Maybe my idea isn’t so hot. I might get tired of having to file my nebulizer mouthpieces into “shanks” or “shivs” – or whatever prisoners call them – to protect myself. Clearly, there’s a downside. Forget I posted this. Thanks.

Next idea?

In the Cement Mixer

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[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.

A Tale of Two Hands

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To the untrained eye, my hands in the following photograph may not seem very different – each has an IV in it. However, to me, this picture represents the two types of experiences one can have in the hospital: excellent and crappy. And so much of that experience comes down to the people who work there and their talent and skill – or lack of one or both.

Which would you prefer?

Let’s start with the image on the left, which is my right hand. This is an example of a beautiful IV insertion with its stat lock and white tape and lack of excess tape. Everything is positioned perfectly. All in all, an excellent job.

The image on the right, my left hand, has no stat lock and looks like something I might do if I had the mind to insert my own IV, which I think I could do if the world was coming to an end and my life depended on it. I wouldn’t like it, but I could do it, though I might need the help of someone’s finger to stop the bleeding when I pulled the needle out. Look at the massive amount of tape used to keep the line in place because the thin white tape and stat lock weren’t used. I lost a lot of hair when we removed it.

Now here’s a question for you: Which site went bad and caused my hand to swell up and turn red? Easy answer isn’t it? I’ve been elevating my left hand for the past week to get the swelling down. The vein is rock hard above and below the insertion site. And it hurts. My medical diagnosis is Puffer Fish Hand.

This distinction between medical excellence and crumminess doesn’t stop at IV sites. It happens daily in the hospital with tests, procedures, and doctors. And for someone who stays in a hospital once in their lifetime, then the IV site on the right might not make much difference in the long run. However, I’ve stayed at the hospital four times this year and spent almost a month and a half there. The difference in the two types of care does matter because I’m exposed to more of these swings in quality the longer I’m there. They add up. And many result in more than a fat, tender hand.

Worst of all, not every difference in care can be photographed. The ones that can’t be seen scare me the most.