Tag Archives: Health Care

A Patient’s Perspective

“So how are you doing today?” asked the nice lady at the desk.

“Okay, I guess,” I answer, glancing at the clock. I’d got hung up getting out the door – the lady who was supposed to come to care for my wife while I ran to town was a few minutes late. We live 18 miles from the clinic and it’s harvest season, so I got hung up a few more times following tractors on the way. The rule is that if you’re less than fifteen minutes early to your appointment they cancel you, but I’d made it in time, thanks to a six-mile stretch of clear road where I could push our aging Toyota up to eighty miles per hour. It took three days of planning for me to be able to get time off work and find someone qualified to watch my wife so I could be here; another minute and I’d have lost the appointment.

“Birthdate?” she asked. I mumbled the numbers, keenly aware that the year I was born was a history subject to the lady. A natural introvert, this isn’t easy for me.

“Okay, have a seat.”

I wandered to the nearest open seat and obediently sat. I glanced around at the others in the waiting room. A few people sitting, staring sullenly at their cell phones. Some oldsters gazing inwardly towards the television that’s been stuck on FOX News since 1986. Children. Quite a few children. Coughing openly as they ran about the room… I’ll need to take my clothes off outside before I go back into the house when I get home.

My wife has an immune system disorder, so I need to be aware of these things. The last thing she needs is for me to come home and give her a cold. The last thing I need is to be here.

I pulled my phone out of my pocket and checked my e-mail – six new messages since I left home, all work-related, all urgent. I ignore them and glance at my texts. Three new texts, two work-related, urgent. One from my wife wishing me well.

I go back to the e-mails and start reading through them. I could feel my pulse rate go up – a customer isn’t happy with a design I’d done for them, and my boss wants a redesign done right away. I jot off a quick “I’m sorry, I’m at the doctor’s office – I’ll get this first thing when I get home” note, even though I’d told her yesterday that I needed some time off. I love working from home, but sometimes it’s awkward.

The second e-mail was another customer wanting a revision. The third was a message from the boss asking me to upload a file to the server. “I need this in ten minutes or we’ll lose the account.” The message was thirty minutes old… Gaaaahh…

My employer is very, very patient with me and goes way out of their way to accommodate my needs, but sometimes things at the office get a bit tense when deadlines loom.

“Chris? We’re ready for you.”

I pulled my gaze from my phone, blinked, and realized the nurse was talking to me. “Oh.” I hoist my carcass off the chair, drop my phone into my pocket, and follow her into the maze. After six or eight random turns we came to a scale. “Up you go,” she said.

Seriously? NOW? I’m wearing work boots, thermals, two shirts, a leather coat, belt, I’ve got about twelve pounds of miscellaneous crap in my pockets… But what do you do? “Well, looks like you’re up a few pounds,” the nurse said, writing down what looked like a four-digit number. “Well yeah,” I thought to myself, “last time I was here it was summer.”

“Okay, follow me,” the nurse said, resuming her course through the maze. Fighting the impulse to drop a trail of breadcrumbs I meekly trailed along behind her, hoping that I’d be able to find my way out later. “Here we are.” She opened a random door and ushered me into a closet.

I made my way sideways to the chair in the corner, wincing a bit as the nurse closed the door – the room was so small my ears popped.

“So why are we here today?” she asked.

“We?” I thought to myself. Out loud, “Well, because you told me to.”

“What?”

“Last time I was here you made an appointment for me and told me I had to be here in three months. So… here I am.”

“Uh… Do you have any complaints? Is there anything wrong?”

“Yes,” I thought to myself, “I’m here and I NEED to be home, that’s what’s wrong.” Out loud, “Well, I suppose my knee has been hurting a little lately.”

“Okay,” she said. “Let’s just get your blood pressure here…” The phone pinged in my pocket, my boss (I could tell by the tone). I took off my coat. My phone pinged again, the boss again, trying to text me again. I rolled up my shirt sleeve as the phone pinged a third time. The nurse cuffed me and pumped the doohicky… The phone pinged again.

“You’re running high,” she said.

“Yeah,” I thought, “I probably just got fired for not being at my desk.” Out loud, “Oh.”

“What medications are you on,” the nurse asked.

“I dunno, whatever the hell you put me on,” I thought to myself. Out loud, “Um… I take four pills, three in the morning, one at night.”

“Okay, I see you’re on Pskanipnadnapie, two milligrams of Snkapndmnapodsin, six kerfloogies of Kkdpaoasdfnkpa, and you take Sknasdfkdsnpp as well….?”

“Seriously, you’re the ones who gave me this crap, don’t you write it down?” I thought. Out loud, “Sure, that sounds about right.” I have zero clue what’s in those bottles – all I know is that one costs me three hundred and forty dollars a month and I don’t know what it does. I only take it half the time anyway – we need the money for my wife’s medications more than mine. It’s not like anyone cares enough to check.

“Okay,” she said, looking at her notes. “The doctor will be in in just a minute to check on your ankle.” Out the door went the nurse. My ears popped again.

I looked at my phone. I had to leave by 12:40 to to be here by 1:15 in order to keep my 1:30 appointment. Twenty-three minutes in the waiting room, five more in the closet, it’s 1:45 now. Over an hour. I checked my e-mail again. Another message from a customer wanting me to change a few words on their design and send them a proof by 1:45 so they could take it to their board. Crap. Feeling helpless I flip over to Facebook and wait for the doctor’s WiFi to connect. And wait. And wait. Nothing… I glance at the three texts from my boss – all I see is the word “NOW.” She must be way stressed, which is unusual, but there’s nothing I can do. Phone goes back into pocket.

I stare at the wall, my eyes idly searching out patterns in the drywall texture as my mind wandered. There’s so much that needs to be done – I haven’t had a chance to get to the dishes for days, laundry is piling up. The oil in the car needs changed about two weeks ago, I haven’t figured up taxes for the quarter yet. I have six ads to design, plus whatever’s in my e-mail. I know all I need to do to make that customer happy is swap out the placeholder photo in the third subcomposition, change the framerate to 24 on the main comp, add some motion blur on the logo… I just need to get home to do it. My phone pings again, a text from the caretaker. “Your wife just had a seizure, but I think I have everything under control.”

“So how are we doing today?” said the voice from the doorway. I tear my eyes away from my phone and look up. The doctor, eyes glued on her iPad, made her way into the room. “I see you’re having some problems with your hip? Oh, your blood pressure is a little high, let me retest that quick before we start.” She took her eyes off her tablet long enough to wrap a cuff on my arm and start pumping the doohicky.

pump pump pump PING pump pump pump….

“Ping.” I thought. “Wife just had a seizure.” I thought. “Think I have it under control” I thought. “If I don’t check that message in the next three seconds I’m going to explode,” I thought. My wife often has an asthma attack following a seizure, and sometimes she quits breathing altogether and loses consciousness — I hope things really are under control.

“Well, you’re running pretty high,” the doctor said. “I’m going to have to increase your medication. Have you thought about exercising?”

“What? No. What?” I glanced at my phone – the text wasn’t from the caretaker after all, but I couldn’t tell at a glance who it was from or what it said.

“You need to exercise more to keep your blood pressure down,” the doctor said, her eyes glued to the iPad in her hands. “I see you’re gaining weight as well.”

“Ping” said my phone.

“So what brings you here today?” the doctor asked.

“I don’t know,” I said. “You told me to be here, so here I am.”

“Oh. Well, how are things going? How do you feel?”

“Well, to be honest,” I said, “I’m not doing real well. My wife has severe medical problems, I’ve had to rework my life in order to stay home to care for her. She’s having seizures now, and sometimes she quits breathing. I don’t know how to cope with this – I can’t sleep, she can’t get out of bed except to pee so I need to do all the household chores as well as my job, her insurance cancelled her policy when she got sick, we can’t get her on Social Security – I’m falling apart. I don’t know where to turn.”

“Ping” said my phone.

“Well,” the doctor said without looking up from her iPad, “I’m not sure what to tell you about your hip, but you need to exercise more. That should help. I’ll increase your blood pressure medication by ten klagemeters. That should help. Is there anything else?”

“To be honest, my stomach has really been hurting lately, my knee really does hurt, I’ve been having headaches, I’m not sure if I’m exactly sane any longer,” I thought. But she’s just poking at that iPad, looking impatient. So I said, “No.”

“Okay, I’ll get that script for you for your blood pressure and I’ll see again you in three months.”

“Okay,” I said. “But what can I do about my wife? Can you tell me how to care for her? What can I do?”

The doctor glanced up for the first time, said, “Just do the best you can. And get some exercise. The nurse will show you out,” and left.

I sat for a few moments, trying to absorb the fact that two day’s planning, an hour and a half of time, and who knows how much money just got spent on the last two minutes, then “Ping.”

I fished the phone out of my pocket just as the nurse poked her head in, “Okay, just take this paper to the front desk, you’re all set now.” I fumbled with the paper, my coat, the phone, and eventually managed to limbo my way out of the closet into the maze. No one in sight – I picked a random direction and wandered until I bumped into the Money Lady.

“How would you like to pay today?” she chirped.

“I wouldn’t,” I thought. Out loud, “Huh?”

“Cash or credit?”

“I don’t care – here, I have a card.” I gotta get out of here before I explode.

“Ping” says my phone.

“Let me just look up your insurance quick… Okay, you have a fifty dollar co-pay.”

“Sure, whatever…”

*ping*

“Okay,” she said, “the doctor wants to see you again in three months. What time works best for you?”

Seriously? Like I know exactly what I’m going to be doing three months from today? “I don’t care, whatever.”

*ping* I can tell without looking at my phone – either I’ve been fired or my wife has died.

“Well, let’s see…” A pause. “We have an opening at one-fifteen on…”

“FINE! That’s fine. I’ll take it.”

“Okay,” she said. “I’ll just write that down on this card for you… Oh, my pen doesn’t work, just give me a minute and I’ll find another…”

*ping* went my brain – remember the *ping*

Out the door, finally. Three angry customers, one angry boss, a wife having seizures, a fifty-dollar bill that the insurance company will undoubtedly refuse to pay leaving me to foot the entire two-hundred and whatever dollars myself, it’ll be after three before I get home – and I’ll need to find a way back to town tomorrow to pick up a prescription for medication I don’t need and can’t afford… All so I could see the doctor for less than four minutes to talk about what she wanted to talk about instead of what was bothering me.

*ping*

Someday I need to try to find out how much the blood pressure medication company pays her. “Probably more than I do…” I thought as I drove my broken Toyota past the Porsche parked in the “Doctors Only” space.

It’s More than People Think…

“Oh yeah, there’s no doubt,” the doctor told me about a year ago. “Absolutely no doubt at all…” She looked down at the test scores for a moment, then back up to me again. “You definitely have ADHD. The results are clear — and by a very wide margin.” She then explained what the test’s results were and what they meant, but to be honest I don’t remember what she said. *ahem*

The psychologist and my family doctor worked together and soon I had a prescription for some tiny little pills. “You won’t feel any different,” the psychologist told me, “but others around you will be able to see a difference. And you’ll be able to get things done.”

And she was right. I didn’t feel any different. But the pile of work on my desk rapidly dwindled, I was able to clean and re-arrange the basement, other projects were finished… And of course I researched ADHD (Attention Deficit Hyperactive Disorder) a little at a time.

I wish I could “shut it off” like that.

I was surprised — it had never occurred to me that I might have ADHD. I mean, when you think of ADHD you think of the ten-year-old kid who fidgets and doesn’t pay attention. The jokes on the Internet, on Facebook, all reinforced that stereotype. The assumption that ADHD is just “not paying attention” is endemic. And erroneous.

ADHD is a real thing. They can test for it in a variety of ways. Scans show distinct differences in the brain activity of those with ADHD and “normal” folks. It’s NOT a made-up illness by any means. And it’s NOT just a matter of self-control or simply “buckling down and paying attention.”

Most people think that folks with ADHD either simply can’t be bothered to pay attention, or their brains are constantly whirling around in circles. That’s what I thought, anyway. And that’s how I felt — my mind was always flying around in a manic, unstoppable chase. I could never finish one thought before the next three interrupted. But the truth is a bit different… If you have ADHD, your brain actually kinda, well, falls asleep.

People with ADHD don’t produce the chemical (I think it’s dopamine, but I’m not sure) that “rewards” the brain when it stays alert and finishes a task. It’s a real, measurable, definable deficiency. The result of that is that, as I mentioned, is my brain basically stops a few times a minute. I could be looking right at you, engaged in the conversation, and have absolutely no idea what you just said… I wasn’t daydreaming — far from it, I was struggling very hard to stay involved — but part of my brain simply shut off. This is what earns us the “he’s just not paying attention” badge.

I just need more self-discipline.

What earns us the “squirrel” badge is how many folks with ADHD react when their brain kicks back on a few seconds later… Imagine being in a conversation with a friend. You suddenly realize you have no idea what has happened over the past few seconds, you just “wake up” in the middle of a situation. What does your brain do? It automatically looks at the most interesting thing in the area. I remember soooo many times I’d be talking with someone and realize I didn’t have the foggiest idea what was going on, and had no clue why my attention had refocused onto something else — the TV, the dog, a sparkly rock in the driveway, a squirrel… I just knew that I was lost and had just done something rude (or at least a bit odd).

So where does the “my brain is spinning in circles and I can’t shut it off” part of the equation come in? Well, when my brain blanks out for a few moments and restarts, it tries to tie the threads back together best it can, chasing around fragments of half-finished thoughts, trying desperately to remember all the details… Then the system crashes again, fragmenting the fragments and the brain scrambles around even harder and I’m trying to listen to what you’re saying and crash… A hundred thoughts, a bright light over there, someone’s talking, I don’t remember what was going on I need to pay better attention to what’s crash… Five hundred half-remembered thoughts floating around the conversation seems to be about dogs, I like dogs, did I remember to shut the lights off in the crash… Five thousand fragments in my mind I’m thinking about dogs and I don’t know why and what’s that light in the corner and someone’s talking and how am I ever going to remember what happ… crash.

It’s all my fault somehow.

I remember very vividly thinking so very often, “I need to throw beer at my brain until it slows down enough for me to think!” And I did. A lot. And it helped, some. Or at least I didn’t feel so frantic as I’d try to chase the million fragments…

So we covered the “Attention Deficit” part of “Attention Deficit Hyperactivity Disorder.” What’s with they “Hyperactivity” part of the deal? Well, people with ADHD learn coping mechanisms at a young age. Most folks have a reasonably steady supply of dopamine (I think that’s what it is) that keeps their minds alert and happy. ADHD people try to keep their brains awake in other ways. In children it’s often fidgeting, being in constant motion. “Very often if you take a hyperactive child aside and hold them snugly in a blanket, they’ll fall asleep in a matter of minutes. Even though they’re in a constant whirlwind of activity, they’re exhausted,” explained my doctor. “The movement, the motion is just their way of trying to stay alert, to pay attention, to learn. As long as they keep moving, their minds are calm. When they stop moving, their brains start to shut off, which causes the jumble of thoughts.” As people with ADHD grow older, their means of coping changes, often involving drugs, alcohol, risky behaviors… The adrenaline junkie who takes his motorcycle out on the Interstate at ninety-five miles per hour without a helmet, whose hobbies involve sky-diving or kick-boxing, might just be coping with ADHD, trying to keep the constant buzz and jumble of half-understood thoughts at bay for a few minutes.

It must all be in my mind.

My wife, Dagmar, bless her soul, has always, always had a problem that I do crossword puzzles at the dinner table. She believes meal time is a time to share our day, to talk, converse, interact. And she thinks I’m ignoring her as I idly peck away at the latest puzzle, and she often — understandably — will quit talking to me, get up and leave. The truth is, though, that by distracting my brain with the puzzle, I can listen and comprehend what she’s saying. If I put the puzzle aside and pay strict attention to what she’s saying, my brain will invariably shut down and start the cycle of fragmenting my thoughts… With the end result that she’s happy I paid full attention to her while I have zero idea what she’s been talking about and my mind is going a million miles an hour trying to tie things together and now I’m grumpy and confused. If I play my puzzle, I can listen, comprehend, understand, and do everything except engage. (It must be said, Beloved Wifey has learned along with me and doesn’t take such things personally any longer, and actively tries to help me.)

As a child I don’t know how many times I was scolded for reading at the dinner table. Same thing. Reading distracted me so I could, oddly, pay attention.

I tripped over this article earlier today (as I was trying to figure out why I’d recently fumbled a very important project at work), and was intrigued by how a few other people described having ADHD… “Like having fifty-nine televisions blaring in my head all at once. Medications turn off fifty-eight of them.” Another described it as, “Like driving in the rain with faulty windshield wipers. Moments of clarity along with lots of blur.”

The medication most often used to help those with ADHD may be a bit startling – amphetamines. Speed. Very, very tiny doses of speed… As it’s a controlled substance I need to visit my family doctor’s office every month to get a hand-written prescription that I need to take to the pharmacy — there’s no way of simply calling in a refill or having the prescription delivered. Even though the dose is tiny (I get no “buzz” or anything), it’s very well-regulated.

Does it help? Oooohhhh yeah!

I’ll take my “sanity pill” about seven each morning when I wake up. By seven-thirty I’m happily working away, able to do whatever needs done. But by one or two in the afternoon it starts to wear off and I find myself slowly losing effectiveness, getting more irritable as my mind becomes more and more cluttered, less able to follow simple conversations…

Yeah, okay, that’s actually pretty funny…

Generally by two in the afternoon I’m done being productive. I’ll switch over to tasks that aren’t very repetitive or don’t need as much concentration, often plugging my headphones in and listening to music or grabbing a beer to help keep my mind from derailing. If you call me after one or two in the afternoon and give me detailed instructions on something, chances are pretty good that I’ll screw it up… (I recently got myself into considerable trouble with a job this way – someone called late in the day wanting me to design something for them. A ten-minute phone conversation left me bewildered and confused, my mind racing a million miles an hour trying to remember what I was supposed to do… And of the entire conversation I only remembered one tiny thing. Loathe to call back the next day and admit that I had no idea what they wanted, I did my best, took a guess, and got it miserably and utterly wrong.)

I was hoping to wrap this article up with a fantastically concise recap, a wonderfully precise description of how it feels… But it’s 2:30 in the afternoon now. I found myself just moments ago standing in my Wife’s room, blinking at her, wondering why I was there, struggling to follow what she was saying, feeling irritable and angry that I didn’t know what to say or how to answer her question (as if I knew what she asked)… The Packers are playing, I think Atlanta just got a touchdown, the dog needs to go out, I’m not sure if we have enough coffee for morning, did I shut the lights off in the crash… I need to feed the dogs, the Packers are playing, I know my wife just asked me a question but I don’t crash… Did I feed the dogs? What’s the score? Why is that light flashing in the corner? Where’s my crash

It’s obscene

I didn't draw this, Martin Shkreli

Whomever drew this is a minor diety…

I know this is old news, but whenever I trip over the fact that in America pharmaceutical companies are legally allowed to jack up prices on medications that keep people alive by over 5,500 percent without warning… It kinda torques me off a bit.

Martin Shkreli is still an immoral, unethical, pathetic excuse for an American in my opinion.

 

A Conversation

“Papa?”

“Yeah, Little?”

“I think I’m old enough to start to figure this stuff out now.”

I stared at the embers for a moment. The warmth of a rare fifty-degree day in northern Iowa in November had lost it’s battle with the evening chill, but I was loathe to give up the day just yet. I pulled my coat a little tighter, wishing I could pull the picnic table a little closer to the fire pit.

“What stuff, Honey?” I took a sip of my beer, wondering if we’d reached the point where the cooler was keeping the last can cold or if it was by now keeping it from freezing.

There was a pause from the other side of the table, then, “I’ve seen this happen before. I know I don’t have the best attention span, but I have a good memory. This happens every year, doesn’t it?”

“What happens, Little?”

“The trees. They look dead. But they’re not, are they – they’re just sleeping. They’ll come back again, won’t they, Papa.”

“Yep, the trees will come back in the spring,” I answered. Bonfires give a person a sense of calmness and patience that is increasingly rare in today’s world. “They always do.”

We sat together for a few moments, listening to the sound of nothing, the darkness gathering its strength from the shadows. We’re normally content with a comfortably silent companionship, but after a few minutes Little stirred again. “Papa?”

“Yeah?”

Slowly, “When the trees come back in the spring… Do you think we’ll all be here to see them?” She stared at the fire.

Another sip of beer. “What do you mean, Honey?”

“I’m old enough, Papa. I think I get it, sometimes. Things die in the winter.” She glanced at me, then back at the fire. “The trees, they come back, but some don’t. The plants, they come back, but some don’t.” She paused. “Every year it’s different.” A longer pause, then, “Will we all be here? In the spring?”

I took my gaze off the fire and looked at Little Buttercup. “Pretty deep questions for a five-year-old.”

She looked back at me, brown eyes wide in the firelight, “Some would say I’m almost 35.”

Papa and Buttercup

Papa and Buttercup

We stared at each other for a moment. I blinked first. “Am I really talking about mortality with a Golden Retriever?” Little Buttercup looked back at the fire, her silence an answer.

Bonfires, even in the chill of late November, bring a contemplative calm to conversations. We enjoyed a moment or two of quiet, thinking our thoughts. Then, from the puddle of fur at my feet, “I’m serious, Papa. I see what happens. I’m not as silly as you think. I need to know, will we all be here in the spring when the trees come back?”

“Oh, of course.” The words were uneasy.

“What about Nitty-Kitty,” she asked, lifting her head from her paws. “I worry about her.”

“So do I, Honey,” I said, “but she’s a tough little kitty.”

“She is,” agreed Buttercup, putting her head back on her paws, staring at the crackling logs. “I try to play chase with her sometimes but she never wants to play.” The fire crackled. “She’s so very small, but she doesn’t know it. Every night she’s out in the woods hunting. I worry sometimes she’ll try to fight that raccoon that lives up in Butterfly Corner and she won’t come back.”

“Me too.” We picked up little Nitty from a shelter years ago knowing she was a barn cat. Her silky black fur is stranded with silver now, but the fierceness of youth is undiminished. “But what can we do? Nitty lives to prowl in the woods – it’s what she loves. If she’s not here in the spring we’ll be sad, but we have to know that she’s doing what she wants to do.”

“Nitty’s tough.” A pause. “I hope she’s here when the trees wake up.”

We stared at the fire, my Golden Retriever and me, letting time slip through us. Then…

“Papa?”

“Yeah, Little?”

Little Buttercup never looked away from the fire. “Papa, why doesn’t Mama ever come outside?”

“What do you think?”

The pup was quiet for a moment. “I don’t know. I remember her coming outside once. You were working by the garage and Mama came outside with her walker to talk to you, but she fell in the driveway on the rocks and hurt herself. I tried to help her, but she cried and you ran over and were all upset.” She sat for a moment. “The only time Mama comes outside is when you push her out in her chair and she gets in the car and you take her away. Then when you come home she gets out of the car and goes straight inside again in her chair. She never stays outside to play.” Two big brown eyes looked up at me. “I think maybe being outside hurts Mama? But how can that be?”

“You’re pretty smart for a dog,” I said. I picked up my beer. Empty. I reached into the cooler for the last can, hoping it wasn’t frozen. A sip, then, “You’re right, sort of. Mama gets sick real easy and she always hurts, so it’s not easy for her to come outside. She can’t walk much because it hurts and sometimes standing is hard for her. She wants to come outside and play with you, but it hurts her too much and sometimes the air makes her sick.”

“How can air make someone sick? I breathe it all the time.”

Mama's Last Outing

Mama’s Last Outing

“Oh, she has some allergies,” I answered. A glance at the Goldie Treever was enough to realize she didn’t understand. “There are invisible things in the air that make her sick.” My mind ran ahead, trying to get the words right. “And she has a disease that makes her so gets sick real easy from other people. You and me can come outside any time, and we can play with other people if we want, but Mama can’t. If she is around other people the germs – more invisible things that everyone has – will make her very, very sick. Everyone has germs and they don’t bother most people, but they make Mama really sick every time.” I picked up my frozen beer and took a sip.

Buttercup picked herself up and moved closer, still not quite looking at me. “I worry about Mama.”

“I do too, Little Buttercup.”

She leaned her head on my knee so I could scritch her ears. “When you take me in the car we only go for a little ride,” she said. “But when you take Mama in the car you’re gone a long time and I get lonely in my kennel. If Mama gets sick being outside and she can’t be around people, where do you go?”

“She has to go to her doctors every once in a while,” I answered, pulling my coat a bit tighter.

“What’s a ‘doctors?'”

“Oh, I’m sorry, Cupsy. I forget sometimes… Doctors are people who try to make Mama so she’s not sick all the time.”

“They must not be very good. She’s always sick.”

“Well, they try,” I said. “They’re really very smart people, and they want to help her. But it’s complicated.” I stared at the fire as I continued, “They don’t really know why she’s so sick all the time, and they only have a few minutes to see her so they don’t have time to really think about it much. But they do the best they can.”

“I wish they could do better. I wish Mama wasn’t sick. I wish Mama could throw the ball for me like you do sometimes when you’re not busy.”

Nothing hurts quite like honesty from an innocent you love. She continued, after a pause, “I wish you weren’t so busy all the time. You’re like those doctors – you only have a few minutes to see me.”

She let that hang in the air while she scratched her ear and I sipped my beer as time whirled inkily about us.

“Yeah, I’m sorry, Honey,” I said. “I wish I could spend more time with you, but I’m just busy.”

“Why?”

“Why what?”

“Why are you too busy to play with me?”

“Well, someone has to pay the bills,” I snapped. “Those damned doctors aren’t cheap. I have to keep working to pay for this you know.”

She sat up sharply. “Wait. You mean to tell me that there are people who can help Mama, but they’re too busy – and you have to pay them? So you’re too busy to play with me?” She paused. “WAIT A MINUTE!”

I waited whilst my pup cogitated.

Seriously?

Seriously?

“Okay, Papa. Explain this. Mama’s sick. People can help her, but they won’t unless you give them money?”

“Yeah.”

“So you have to ignore me – and Mama too! – to work to make money to pay these people?”

“Yeah.”

“If they want to help her why do they need money? Why don’t they just help her?”

“I wish it were that way, Honey,” I said. “But they need equipment and tools to help her, and they had to go to school for a long time to learn how to help people and that’s expensive.”

She flopped down on the ground. “But you said they don’t have time to help her much.”

“They don’t – they only have a few minutes to see her. They have to help a lot of people every day to make enough money to keep helping people, so they can only see people for a few minutes. Mama’s illness is something they can’t really help, but they try.”

“Monkeys are confusing,” said the canine. “These ‘doctors’ must be really poor and live in tiny shacks if they have to work that hard. Why don’t people just give them more money?”

“Oh no,” I replied. “Doctors are usually very rich. They have much, much more money than we do and usually live in really big houses.”

“I don’t get it. If they have a lot of money, why don’t they help people like Mama so she can be healthy and play with me?”

“I know, Honey. It’s confusing.” I sipped the last bit of my frozen beer. “The doctors want to help, but they can’t. Mama’s illness isn’t something anyone really understands. It’s expensive, but we have to keep seeing the doctors because insurance makes us.”

At this point the Golden Retriever named Little Buttercup stood up and stared me right in the eye. “Okay, monkey, what’s an ‘insurance’ and why won’t THEY help Mama?”

This is going to be difficult… “Okay, Honey. Insurance is something people buy to help when they’re sick. You pay in a little bit every month even when you’re healthy, then when you’re sick they give the money back so you can pay the doctors. It’s like a savings account in a way.”

She stared at me with a steadiness that was unnerving. “So this ‘Insurance’ thing make you take Mama to the doctors even though the doctors are expensive and can’t help Mama?”

“It gets worse, Cupsy.” I replied. “When I take Mama to the doctors she’s around other people. Remember how I said being around other people makes Mama sick? So when I take her to the doctors, they don’t help her much AND it makes her sicker every time.” I shivered as the fire waned. “But the insurance people won’t give Mama her money if she doesn’t go to the doctors because if she doesn’t they think she must not really be sick. So she has to go to the doctors and get sick and I have to work to pay their fees so insurance will believe she’s sick and will give her her money.”

She blinked at me. “Who in the world made up this system?”

“Beats me.”

“But wait! You said these insurance people give Mama the money she paid them when she’s sick.”

“Yeah?”

“So why do you have to work so hard that you don’t have any time to spend with me or Mama?”

“Because the insurance people took Mama’s money and decided to keep it. They say she’s not really sick so they shouldn’t have to give her money back. So we have a lawyer to fight the insurance people for us, but we have to pay the lawyer. So I have to work to pay the lawyer to get the money from the insurance people to take Mama to the doctors that can’t help her.”

“Papa?”

“Yeah?”

“My head hurts and I’m sad now. Can we go inside?”

I shook my empty beer can. “Yeah.” I put my hand on her head and scritched her ears. “I hate to say it, Little, but there’s more. Tomorrow we’ll talk about how people around us elected a government that wants to take a different kind of insurance away from us altogether so Mama can’t have any medicine.”

“I hate to say it, Papa, but I think you monkey-folk are really weird.” She stood up with a yawn, picked up her tennis ball, and headed for the house. “At least wolves look after their own and care for their sick.” A pause as she trotted up the stairs and stood by the door, waiting for someone with thumbs to let her in.

“Papa?”

“Yeah, Little?”

“Do you think Mama will see the trees? Will Mama be here in the spring?”

“Yeah, of course she’ll be here.”

“Papa?”

“Yeah, Little?”

“Why are you crying?”

“Let’s just go inside, shall we?”

A reaction

…Hmmm… Sometimes you don’t get what you work for. Congress has defunded Social Security Disability to the point where we can’t get any help for my disabled wife even though we’ve paid into it for decades. And to make matters worse, the private long-term disability insurance company we’d been paying in to for years has used Congress’ deregulation to change the rules and has now stopped paying her monthly benefits as well. I’ve had to let my people go and sell off most of my business in order to stay home and care for her… We’ve given plenty of effort – we’re both college educated, we were both highly regarded professionals in our fields, I started my own company – then she gets ill and *poof* it’s all gone. We’ve worked. I’m still working 18 hour days. We’ve already lost so much, now we’re in danger of losing our home… We don’t want anything free, we just want to get what we’ve paid for.

And trust me, she WANTS to work! She’s trained her whole life to do her job, to be a professional. But she’s in so much pain, is so very ill there’s no way she could even get down the steps to the driveway let alone actually work.

If Americans don’t have government protection, if we don’t regulate the insurance industry, if Congress doesn’t fund Social Security, it’s people like Wifey and myself who get caught in the machinery and lose everything. The people on Social Security Disability, Medicare, Medicaid, etc. aren’t scamming the system – they’re people who need help, who have paid into the system, who are depending on those programs to survive.

Dollar Sign

A Fine Mess…

Health care costs are a very real concern for us. At one point last year I was paying 48% of my income directly to private health care insurance. Thankfully the Affordable Care Act was passed – I’m saving about $900 a month on my insurance alone now. BUT, the insurance isn’t as good as what I had before in many ways – I have to pay more in deductibles, and office visits cost more as well. I’m still coming out way ahead on the deal, but it’s frustrating and nerve-wracking.

The problem is, the system isn’t working for everyone the way it did for me. Here’s an NPR story that looks at the issue in a bit more depth:

I’m very tempted to write a detailed essay on my views on the matter, but I’ll restrain. I’ll settle by saying I’m very, very concerned about the views the leading conservative presidential candidates have on the issue. If we deregulate the health care insurance industry we leave ourselves open to more corporate greed demanding, in essence, “your money or your life.” Pharma BroRemember Pharma Bro Martin Shkreli? The young man who bought rights to a pharmaceutical and immediately (and quite legally) raised the price from around $13 a pill to over $750? The drug in question is a common, and very effective, treatment for an illness often suffered by people with compromised immune systems – people like my wife, for example, and those who are on chemotherapy treatments. Without the medication a person only has a 15% chance of survival. So it’s quite literally a question of your money or your life. Without government regulation, health care insurance companies could very easily follow Shkreli’s example.

And that scares me.

Is there anything we can do?

Man, just let me know if there’s anything we can do…

You know, if I had a nickel for every time I heard that phrase I’d probably be a thousandaire by now. People wanting to help, or at least saying they want to help… And I understand that! I bet I say that phrase to friends three times a week myself.

My wife is ill. She’s been very ill for a number of years now. There’s no cure, she’s going to die (just like the rest of us, only a bit quicker). She has a number of problems, notably CVID, Sjogren’s Syndrome, and uncontrolled asthma. The three are related, and each one of the three illnesses also brings along a host of other secondary illnesses along with it.

Push comes to shove, my Beloved  Wifey is disabled, and there’s a good chance she may pass away before her time. We struggle to keep her working – her HR department keeps threatening to fire her. If she doesn’t go to work, she loses her job, we both lose our insurance. If she goes on disability it will take two years before they pick up her insurance again.

We’ve refinanced our mortgage, we’re paying ahead at the funeral home… She can’t get life insurance, so we’re trying to make things as comfortable as possible for her over the next few years and at the same time find a way I can live here on our acreage once she’s gone.

Beloved Wifey can go to work sometimes. Other times she has to stay here at home for days or weeks on end. We never know. Day to day. Hour to hour. She misses work, I need to make up her income somehow on my own. I’ve grown used to 18 hour working days over the years.

So, as my wife’s primary caretaker, when friends say, “just let us know if there’s anything to do,” it makes me flinch a little. “Oh, we’ll let you know if we need anything,” we always say. Then we put it out of our mind.

People often say things they don’t mean. And we know it.

“Is there anything we can do to help?” Yes, can you clean the upstairs bathroom? We haven’t had time. The tub up there, the drain doesn’t close right. And we live in the country, so there are always dead flies on the windowsills no matter what we do. I’d get it myself, but I need to be tending to my customers – we need all the money we can get.

“Just let us know if there’s anything we can do.” Sure, it’s no secret we’ve been working on the basement for the last four years – we still need help getting the lights up, the ceiling done, some carpet down on the floor, some sheetrock needs to be hung… My brother-in-law is helping, but his time is limited. We can’t enhance our income by doing studio photo shoots until the studio is finished, and we can’t stop paying high utility bills until we can get a couple doors up to stop the draft… The basement is a liability right now, but it could be making me money – if I can find a way to get it finished. But I’ll never ask.

“If you ever need anything, just let us know!” I need to be working, to be sitting in front of the computer, to be learning a new technique with my camera… I need to be making money. But I don’t have time to take care of Beloved Wifey, tend to the dogs, AND get my ten hours of work done today. I could sure use some help – just someone to take the garbage out and feed the dogs, maybe throw the frisbee for SuperPup Buttercup.

“I really wish we could do more.” Well, I have twelve hours of work to do, and I also have four hours of laundry to get through, two dogs to tend to, and a sick wife to help – it’d sure help if you could just fold the laundry for me… Or straighten our prop room so I can find stuff when I need it in the spring. Anything. Any help is appreciated. Any little thing.

But those things are difficult to say. How does a person admit that he can’t care for his family without help? “Nah, we’re doing fine.” I have a grove full of deadwood that I can’t find time to deal with. I’ve offered to hire people to come and take the firewood away if they’d just cut it and take it… But that never works – I’ll be out in the woods for a good ten hours this weekend trying to clear the winter deadwood away, and another ten hours trimming the trees outside my grove so the neighboring farmer can get through with this equipment this spring. Those are twenty hours I could use working, or spending time with Beloved Wifey. But how do I say this?

How do I say that I really could use a load of groceries from town? It’s easier for me, somehow, to take three hours off work to go to the store myself then admit I don’t have time – then make up those three hours by working between two and five in the morning. (Five is when I normally get up so I can get a few hours work done before Wifey and pups wake up and demand attention.)

If you really do wish to help, we’d be VERY happy to accept – but it’s difficult for us to ask.

Do you have a few hours to help pull deadwood out of the grove? I’d be more than happy to let you! That gives me that much more time to catch up on work… Please don’t ask, I’ll say I can do it on my own. Just come and do it. I have a chain sharpener. Are you coming from town? If you ask, we’ll say we don’t need anything. In truth I’d be happy to pay for someone to grab some staples from the store… We’re always out of dog food, we can always use “real” food (we live on English muffins and frozen Totinos pizzas – everything else takes too long to cook. Every minute I spend away from my computer is a minute I’m not making money to help Wifey. Or spending time WITH Wifey.

If Beloved Wifey should need to go on disability, we’ll need to find means to pay for both our insurance coverages for a minimum of two years before Medicaid kicks in. Refinancing, paying bills ahead – we’re doing what we can to be ready for the time. But we sure could use some advice, someone to come over and explain how this all works. To me the words of finance are may as well be ancient Latin.

“Is there anything you need?” Yeah, I need a friend to stop over with a six-pack and some funny stories before I go crazy. We need someone to figure out if we need to insulate our basement (who has time to research that sort of thing?), we need people to stop over and play with the dogs… But if you ask, we’ll be too polite, too embarrassed, to “Iowan” to accept.

So, please, just DO it. We’d appreciate it more than you could know.

Thoughts About Dagmar’s Surgery ‘n Stuff

The Procedure

Why they want you there so early is beyond me. If you’re gonna have an operation, wouldn’t it be better for you to have a full night’s sleep the night before? I guess not… Dagmar had to be there at 5:30 a.m. (For you military types, that’s 0530 oo-RAH, prime @ss-kickin’ time. For Republicans it’s time to get to work repressing the working class. For Democrats its, like, man, that’s like really early and stuff. For Libertarians, that’s when Mickey’s big hand is on the five and his little hand is on the six… In any case, it’s like, man, really early and stuff…)

“Vhat time is it?” she asked me blearily, one eye open. “Vhat are you doing up?” (Her Austrian accent is always stronger when she’s sleepy. Sometimes she mixes German and English together, which is always kinda funny sounding. Germish.)

“It’s four in the morning,” I answered, rubbing my eyes. “If we’re gonna get you to the hospital in time I’d better get in the shower and start packing.”

“You shower. I schlaf.” With that she rolled over and started snoring.

By quarter after five everything was packed and in the car, and off we went to the St. Luke’s, the smaller of the two hospitals in Sioux City. “Why did you pick St. Luke’s, anyway?” I asked Dagmar. “I thought after that time you sat in the emergency room for eight hours before anyone saw you that we decided we were going to go to the other hospital.” Dagmar had a kidney stone a few years ago. I ran her to the emergency room, where she sat curled up on the floor for over eight hours before she passed the stone on her own without any medication. Yes, they sent us a bill, even though she didn’t get so much as an aspirin.

“Yeah,” she said. “I know. But my mama used to work at St. Luke’s, und I know people there. Dey have nicer rooms.”

We pulled into the parking lot. I dropped her off at the door, parked the car, and met her at the front desk. The lady at the front desk was really nice and ushered us into a “prep room” or some such thing where Dagmar had to put on the little half robe. A nurse came in and very nicely explained what was going to happen. Another came in a few minutes later and poked Dagmar’s arm with an IV. Shortly after that yet another nurse came in and asked a bunch of questions.

“Boy, it’s sure going quick,” Dagmar said to me after the third nurse left. “I can’t believe they got the IV in so easy — usually dey have to poke around for a long time.” Dagmar has notoriously small veins in her arms. Last time they had to give her an IV they were eying her ankles… “Everyting’s going so vell!”

About that time the anesthesi… anisthes… drug doctor came in. “Hello, how are we doing today?”

Dagmar has adverse reactions to almost every painkiller known to science, so she learned long ago it’s best to simply hand the anesthesiologist the form the LAST anesthesiologist used. That way she knows it’s gonna work. “Here,” Dagmar said. “This is vhat verks for me. Und can I maybe have an epidural?” The doctor was agreeable to that. “Sure,” he said. “We’ll give you an epidural, then we’ll give you a real light dose of the general anesthetic. You won’t feel a thing.” He patted Dagmar paternally on the head and left.

“Gosh, I hope I don’t feel anyting,” Dagmar said, laying in the little bed. “I don’t vant to remember the pain.” Dagmar’s mother, Kriemhild (or Mama K), came in. “Hello, Mama! The nurses and doctors here sure are nice!”

They chatted a few minutes, Dagmar and Mama K. Then a nurse came in. “It’s time to go,” she said, grabbing Dagmar’s little trolley-bed and dragging it out the door. “Everything will be okay.” Mama K and I followed into the hall and watched our beloved get wheeled towards the operating room. I could hear Dagmar’s voice as she rode her little bed-trolley through the doors at the end of the hall, “You’re a nice nurse. I’ve never had an epidural. Vill I remember de operation? I don’t vant to remember… What pretty blue outfits you all have! Vhat’s dat machine for?”

Mama K and I stood there for a moment, then went back to the waiting room to start The Wait.

“So far so good,” I said to Mama K as we sat down. “The nurses were nice, the doctor was nice, they got her IV in on the first try – this is going really well.”

“Ya, I haf a good feelink about dis,” answered my mother-in-law. “She’s in good hands. Did dey say how long this vill take?”

“Forty minutes is the guesstimate,” I said. Mama K pulled out her Bible, opened it to the bookmark and proceeded to stare at it. I could tell she wasn’t reading the passage, but it gave her something to look at. I sat with her for a few minutes, then said, “I have to go home to give our diabetic cat his shot. I’ll be back in fifteen minutes.” Mama K nodded and smiled.

I zipped home, shot the cat, and was indeed back in my Waiting Chair within fifteen minutes. I sat and stared at a magazine while Mama K sat and stared at her Bible. A few minutes later my mother arrived to help us wait. We talked.

The forty minute mark went by. We started to look at the door more and more often, hoping to see a nurse or doctor with news. We chatted.

After fifty minutes I was pacing back and forth between my chair and the door. We chatted.

After an hour we quit chatting and spent our time staring at the door, willing a nurse to come and tell us what’s going on.

I think it was around the eighty minute mark that the nurse finally came through the door. “Dagmar’s in recovery,” she said. “She’s doing fine. The doctor will meet with you in this tiny little room over here.” She led us to the tiny little room, where the three of us sat for another five minutes waiting for the doctor.

The funny things about small rooms is that they hold the tension in very well. There’s nowhere for it to go.

The doctor finally came in, a tall confident lady with black hair. “Hi, I’m the doctor,” she said. “Everything went well.” We all relaxed a bit. The doctor continued, “I made the incision here,” she traced an invisible line on her abdomen from hipbone to hipbone, “but as soon as I opened her up I could see things were out of place — nothing was where it was supposed to be. We were prepared for that.” (Dagmar’s last surgeon found her left ovary behind her right one.) “I had another surgeon in the room to handle that, and we did end up calling in a third surgeon as well to handle the bowel. He had to cut through a lot of scar tissue and adhesions from her other operations. We found Dagmar’s uterus tangled up in her intestines and removed that, and she had a cyst the size of an orange or small grapefruit on her ovary. We got that out. Dagmar also had endometriosis, an ovarian infection that causes a lot of, well, sticky stuff. We cleaned that up best we could, put her bowel back in, and stapled her all together.”

Day One, Thursday. The Incompetence Begins.

The doctor looked at us as we sat in the tiny room. “She must have been in a LOT of pain for a long time. She’ll feel a lot better now. Her ovary and uterus had to come out. It was time.” We asked a few questions, mostly out of nervous energy, then the doctor left.

“Vell, dat’s good news!” Mama K said, standing up.

“Yes, it sounds like everything’s going to be okay,” said my mother as we made our way into the hall.

“She’s getting such good care,” said Mama K, holding her Bible. “Everyone’s been so good here.”

“Where do we go now?” I asked, eager to see my little Austrian Snickerdoodle. No one knew. I went to the front desk. “Excuse me,” I said. “My wife just got out of surgery. Do you know what room she’s going to be in?”

The lady glanced up at me, seemingly annoyed. “Fourth floor.”

“Where on fourth floor?” I asked. “How do I get there?”

“Just go up to the fourth floor.” she said, eyes glued on her computer monitor. I had the feeling she was playing solitaire.

I shrugged, went back to my mother and mother-in-law, and we just sort of wandered through the hospital looking for an elevator. We eventually found one and got to the fourth floor. “Oncology,” read the sign on the wall on the fourth floor. The cancer ward. We three looked at the sign. “No one said anything about cancer,” I said. “Why is she in the cancer ward?” We stood there for a moment, looking down both halls for a nurse’s station, or even someone who looked like they knew where they were going. “Let’s go this way,” I said, wishing I had brought some bread crumbs along with which to leave a trail through the maze. “No one said anything about cancer…”

We found a nurse’s station about six miles down the hall. There was a big marker board on the wall with a lot of names on it and scary symbols. “Hi,” I said to the lady at the desk, leaving my mother and Mama K to chat. “My wife just had a hysterectomy. They told us she’d be up here…?”

“If she had a hysterectomy, why would she be up here?” the nurse asked. “This is oncology.”

“I know, I saw the sign. But the lady in the waiting room told us to come here.”

“This is oncology,” the nurse repeated. “Hysterectomies are on the second floor.” A movement over her shoulder caught my attention. It was another nurse writing something on the marker board — “Dagmar, rm 421, gyno rcvry.” I looked at the first nurse. “That’s my wife there on the board,” I said.

“Oh, yeah, sometimes they bring people up here to oncology from gynecology if we have extra room. They’ll bring her after she’s done in recovery.”

“If you knew that, why didn’t you believe me when I said my wife was here?”

“This is oncology,” she repeated. I started to get the impression that the lady just learned that word and was trying to show off. “We’re oncology.”

I went back to Ma and Mama K. “This is oncology,” I said. “She’ll be in room 421. Don’t talk to that nurse.”

Room 421 ended up being another three miles down the hall on the left. But geeze, what a room! I’ve seen hotel rooms worse than this. A private bathroom with a shower, a place for Dagmar’s little trolley-bed to go when they brought her up, a desk, a couch with a hide-a-bed, a rocking chair, an easy-boy, and a TV with static. The view was great, too, overlooking a scenic park.

St. Luke's Hospital Room

Classy Digs!

“Vow!” said Mama K.

“This is nice!” said my mother.

We all kinda stood there for a few seconds, wondering how long it would take Dagmar to get out of recovery. I mean, she had an epidural with just a light anesthetic, so it shouldn’t take too… “Here she is!” I said as the nurse wheeled the little bed-trolley into place. We all gathered around to peek at Dagmar. “Hi everbuddy,” she said, looking up at us. “Is it done?”

“It’s done!” I said. Mama K chimed in, “You’re avake! You look fantastic!”

You know, it always breaks your heart to see someone you love come out of surgery — no matter how good they look. Dagmar was a very small lump under the blanket. She was pale and shaky. She had an oxygen tube stuck in her nose. There were all sorts of tubes coming out from under the blankets. An IV stand with three bags. But she was smiling! She was smiling. Everything’s good when Dagmar smiles.

“It doesn’t hurt,” she said. “I’m awfully tired… Ich glaube I sleep. Schlaf.” Her voice trailed off as she fell asleep.

The doctor came in. Dagmar said she was feeling pretty weak. The doctor lady looked at Dagmar’s belly. “It all looks good,” she said, “but we did have to play with your intestines quite a bit. I want you to take it slow. Don’t move too much, just concentrate on healing. Take things slow. You’ll probably be here until Monday or Tuesday, and that’s fine. We don’t want to push things too quickly.” She smiled reassuringly and left.

Dagmar napped on and off throughout the morning. My mother went back home. Mama K and I would read quietly when Dagmar slept, and we’d chat with her when she was awake. Most of the time when you’re in the hospital there are always people coming and going, taking blood, checking things… But we were pretty much left alone until after lunch.

“Okay, I need you to sit up,” the nurse told Dagmar. “You need to start moving. The more you move, the quicker you heal.” The nurse started fumbling around with Dagmar’s bed.

“Are you sure about this?” I asked. “She just got out of surgery six hours ago.” Mama K looked on in concern.

“Yes, she needs to get up,” the nurse said without looking up.

“I get up,” said Dagmar. I held the IV cords out of the way as Mama K helped Dagmar struggled to sit up. The nurse watched. “Hoo boy,” said Dagmar, sitting on the edge of the bed, “I think I might need a bucket. The vorld is spinning.”

“Here’s a bag if you get sick,” the nurse said, handing Dagmar a baggie. “Now get up.”

“No, I need to sit here a minute. Dis is too fast.”

“We need to get you moving. Get up.”

“No. I’ll pass out. No.”

“Get up.”

“No.”

Mama K and I both took a step closer to the nurse. We want to follow authority. The nurse represents the medical community, after all. What she ways must be true. But there’s Dagmar in pain and misery. Do we defend our loved one? Do we defy authority? Or do we assume the nurse knows what she’s talking about? But the doctor said to take things slowly. In other words, do I punch the nurse or not?

Dagmar solved the dilemma for us by simply laying back down. “I’m not getting up yet. Give me a minute. I’ll try in a few minutes.” The nurse, sensing defeat, left without a word, her mouth set so tight I could swear her lips disappeared.

Ambulatory Patient

Dagmar and Mama K Walking the Halls

True to her word, Dagmar tried to sit up again just a few minutes later. After sitting for a bit, we untangled her IV and various other tubes and helped her stand up and walk around. Out the door and up the hall twenty feet, then back to the little trolley-bed. Dagmar was asleep again as soon as she was in bed.

The afternoon continued and drifted into evening. Dagmar snoozed and woke and snoozed again. I went home and gave the cat his evening shot and grabbed my iMac and went back to the hospital. Mama K went home to take a nap. I set my computer up on the desk and logged into the hospital’s complimentary wireless network and got caught up on some work in the minutes Dagmar snoozed. She was spending much more time awake than asleep now.

I learned that you can’t really sleep on a hide-a-bed.

Day Two, Friday. The Incompetence Continues.

“It hurts more today,” Dagmar said. She still had the needle in her back for the epidural, so the medication she was getting there was helping the pain in her abdomen, but you could tell she was hurting.

“Is it your incision that hurts?” I asked her.

“No, it’s my IV und my catheter. I vish I didn’t need them.” Unfortunately, though, if you have an epidural you need a catheter.

The morning and afternoon were spent with Dagmar taking small walks up and down the hallway and chatting with her mama. When she would nap I would get a few minutes work done on my computer — I had two newsletters from work to typeset and design somehow. Every time a nurse came in Dagmar would mention her IV and catheter, but all they said was, “you just keep walking as much as you can.” Once a specialist came in to look at the IV. She moved it to the other arm.

I went home to give the cat his shot that evening and lay down on the couch to get a nap. Dagmar and her mother both encouraged me to get some sleep, so I did. Much to my horrification I slept until five the next morning! I got up, sprinted through the shower, shot the cat again and ran to the hospital.

Day 3, Saturday. Incompetence Intensified.

Miserably guilty that I’d fallen asleep at home whilst Mama K was watching Dagmar in the hospital, I ran down the fourth floor hall to get to her room as soon as I could. I knew I shouldn’t have tried to take a “two hour” nap! Dammit dammit dammit. I swooshed past the nurse’s station, thinking I was a failure for abandoning my wife for the night. I skidded to a stop in front of her hospital room door and peeked in. I could tell immediately that something was wrong . Dagmar’s face was pale. She had a self-absorbed, inward look, as if she was battling something inside. The IV was gone. Mama K was sitting on the edge of the chair by Dagmar’s bed. I could see she was on the verge of exhaustion; worry written on her face. It was five in the morning.

“What happened?” I asked. “What’s wrong?”

“It vas a rough night,” Mama K answered. “Dey took her IV und catheter out.”

“Why?” I asked, gazing at Dagmar, tugging a little on her toe. “They said they were going to leave that in until Monday. This is only Saturday morning!”

“It vas time,” Mama K said. “Daggie’s vein in her arm perforated. Dey never flushed the IV like they vere supposed to. So they had to take the IV out early.”

“What about the catheter?” I asked. “I know Dagmar was complaining about it hurting yesterday.”

Mama K looked at me. “Those nurses, they vere supposed to clean it every few hours, und they never vunce did. They never cleaned it! Now it has to come out, even though Dagmar’s not ready for that yet.”

“You’re kidding me!” I said.

“De grumpy night nurse said it vasn’t her job,” Mama K continued. “I asked her whose job it is, but she just left und said it vasn’t her fault.”

Just then Dagmar stirred, reaching over to hit the “call” button on her bed, sweat beaded on her forehead. “Yes?” came a voice from the speaker.

“I’m really in a lot of pain,” Dagmar said. “Can I have my ibuprofen, please?” The nurse on the other end never answered but rather just hung up. Click. That’s standard operating procedure at St. Luke’s, I guess — I never once heard them do anything but hang up on Dagmar when she hit the call button. Dagmar closed her eyes again.

“They took her epidural out vhen they took her IV,” said Mama K. “She hasn’t had any pain medication since before midnight. It’s been six hours. She’s been asking for ibuprofen or aspirin ever since und dey just ignore her.”

“You’re kidding me!” I said, sitting down. I started mulling through my options. My first instinct was to go to the nurse’s station and start choking people until someone got the hint and helped my wife. My second thought was to get her the hell out of this hospital and go to Mercy Medical across town. My third thought was that choking someone really sounded pretty good.

My ruminations were interrupted by the door opening. An elderly nurse walked in. No knock or anything… I say “elderly,” but she was probably only in her fifties — but she wore old-school hair, old-school clothes, and an old-school attitude. She looked like an unhappy prune. “What do you want now?” she asked Dagmar in a snitty tone.

“I vant some ibuprofen, please,” Dagmar said. “It’s been over six hours and I haven’t had any painkillers und it hurts.”

“I told you when I took the IV out that this would happen. You should have left the epidural in.”

“If you vood have taken care of her IV and catheter like you were supposed to, she’d still have the epidural,” said Mama K.

“I’ll go see if you’re allowed medication,” Nurse Prune said as she left. “Allowed medication?” I thought to myself. “It’s over-the-counter ibuprofen. Allowed?”

Dagmar sunk back into herself. I could see her utilizing her pain management techniques. At this point I should probably mention that Dagmar is NOT a wimp. A few years ago she had to have her head scanned for a different ailment. “How long have you had these migraines?” the doctor asked at that time. “Oh, I don’t have migraines. Vunce in a vhile I get a liddle headache, but nothing bad,” Dagmar told him. The doctor gaped at her. “No, you don’t understand. You have migraines so bad they’ve left scar tissue in your brain.” So when Dagmar says something hurts, most likely it really hurts…

Time passed. Dagmar covered in sweat, eyes clenched shut. Mama K reading, and me brooding. After a while Mama K said she had to go home to nap. Dagmar looked up long enough to say that was a good idea, so then it was just Dagmar and myself. Dagmar pushed the button again. “Yes,” said the voice from the speaker.

“I’d really like some ibuprofen, please,” Dagmar said. “It’s been seven hours now. Please. It really hurts.” The only response was “click.”

An hour later there was a tap at the door. I looked up and saw a head poke in the room. A male nurse. He looked at me. “Radloff?”

“Schroeder?” I asked.

Both of us at the same time: “Dude! How ya been?”

“Honey, this is Schroeder. I was in the Guard with him in the 80s.” Turns out my buddy Schroeder had moved to Houston and had lived there for the last 15 years or so, and had just moved back to Sioux City a few months ago. “Can my wife maybe have an Ibuprofen?”

Schroeder glanced at the passel of paperwork in his paw. “Oh, certainly,” he said. “She was due for some painkillers four hours ago.”

“She hasn’t had anything since before midnight,” I said.

“You’re kidding me! I’ll be right back.” He scampered out the door.

“Your friend seems nice,” Dagmar said. “I can’t believe I have to stay here for three more days.”

“I feel so bad for you,” I said. “All they can do is give you ibuprofen and they’re not even doing that.”

The door opened. It was Schroeder with a little sippy-cup with a couple pills in it. “Here’s your ibuprofen,” he said. Dagmar wasted no time getting the pills down her gullet. Schroeder started checking Dagmar’s blood pressure and stuff, chatting lightly with us.

When he was about halfway through, the door swung open and a tall man walked in, with Nurse Prune close behind. “Hello, your doctor is gone for the weekend. I’m the doctor on call. How are you?”

“I’m in a lot of pain,” Dagmar said. “But Mister Schroeder just brought me some ibuprofen.”

“He shouldn’t have done that,” hissed Nurse Prune quietly, seemingly doing a Gollum impersonation. “thiss is MY patient, my precioussss.”

The doctor grabbed Dagmar’s toe and wiggled it. “Well, you look okay to me. Pack up and go home if you want.” He whirled and was gone, taking Nurse Prune with him.

Schroeder, Dagmar and I all looked at each other, competing to see who could look more surprised. “Well, I’ll go get your discharge papers,” Schroeder said, breaking the stunned silence. “You still look a little shaky though,” he said, looking at Dagmar. “You can stay another couple days if you want. And you’ve paid for this room through midnight if you want to stay today.”

“Who’s going to be my nurse tonight?” Dagmar asked.

“You’ll have the same nurse as you had last night.”

“I’m going home. I’m not going to put up with that voman again.”

“I’ll finalize your paperwork for you,” Schroeder said, heading for the door. “You can go whenever you want.”

I helped Dagmar get on her feet and started packing. Within five minutes we were ready to go. A nice lady named Donna (she had been the consistent bright spot in our stay — a cheerful woman who popped her head in every couple hours to see if we needed food, blankets, water — she was a Godsend) helped me find a cart for all our luggage, flowers and assorted crud. “Vhat do we do now?” Dagmar asked Donna. “Do we just leave?”

“I guess so,” said the nice lady. Dagmar and I slowly made our way up the hall, Dagmar keeping one hand on the cart I was pushing. “I don’t know if I can valk all the way to the car,” she said to me. “Don’t they give you a vheelchair ride to the front door?” I shrugged. We walked past the nurse’s station. Schroeder glanced up as we walked past. “Oh, hey,” he said. “Leaving already?”

“Yeah,” I said. “She’ll be more comforable at home.”

“Yep. Well, have a good day. If you need anything, just call!”

“Can I have a vheelchair, maybe?” Dagmar said.

“Oh! Of course!” Thirty seconds later another nurse-type lady was pushing Dagmar up the hall whilst I followed pushing our cart ‘o crap.

Home Sveet Home

“I can’t believe they’re letting you go home,” I said to Dagmar as we pulled into our driveway. “Didn’t your surgeon explicitly say you’d be there until Monday or Tuesday?”

“Yeah, dat’s vhat she said, but I’m NOT going to stay with dat nurse again. If the doctor on call said I go home, I go home.”

That was all a little more than a week ago now. Since Dagmar’s been home I haven’t seen that look of pain on her face, not even once. By the next afternoon she was up and valking half a block up the street and back. We’ve had lots of visitors and flowers — including a bunch of flowers from St. Luke’s with a note, “Sorry your visit wasn’t what you expected.” To me that translates into “Please don’t sue us.”

We’re sorely disappointed with St. Luke’s. The prep nurses and surgical team were fantastic, and the lady that took care of our room, Donna, was fantastic. But the nursing staff on that floor seemed, by and large, rude. Nurse Prune in particular seemed happy to let a patient suffer because it “wasn’t her job” to do anything but take notes and sniff unhappily. My buddy Schroeder was good, but we only saw him for ten minutes. We’re not going to go to St. Luke’s again if we have a choice in the matter.

Dagmar’s perforated vein (from the IV they failed to maintain) has healed, thankfully. She does have a bladder infection (caused, maybe, by a catheter left in for three days without any cleaning?) to deal with, but that’ll pass. For someone who had three surgeons stretching her intestines halfway across the operating room, Dagmar’s doing VERY well! She’s so much happier now. She’s still weak and has pain now and then, but another month at home and she should be back at work.

And that’s that!

Dagmar

It went well!

Three surgeons spent over an hour playing around with Dagmar’s innards, but everything went well. No complications, no surprises, full recovery expected!

I’m so happy!

She’ll be in the hospital for a few days yet, then she’ll need the usual six to eight weeks recovery time… But she’s doing great!

Dagmar’s Operation

(This was originally an e-mail I sent out to a few people.)

Just a quick Dagmar update…

Dagmar had her little operation yesterday. We (Dagmar’s mother Kriemhild and I) took her in to the doctor at noon, watched Dagmar sign a lot of papers with big scary words on them, and got ushered into a little room.

After a few minutes of sitting in the little room, fidgeting, a nurse-type lady bustled in. “How is everyone today I just need to take a little blood are you Dagmar hold your arm out please,” she said in one quick blurt.

“I don’t do so vell with blood,” said Dagmar. “Can I please lay down?”

So the nurse-type lady pulled a little hide-a-bed out of the wall, Dagmar plopped down and had her blood drawn. “I’m really nervous,” said Dagmar. “I don’t mind the operation, but I’m allergic to painkillers und I don’t like anesthesia and I’m really nervous.”

The nurse-type lady smiled nicely at Dagmar. “I can give you a nice little ‘cocktail’ of stuff that’ll calm you down. You’ll like it. You won’t be nervous at all.” With that she bustled off, leaving Dagmar a little robe to put on. A few minutes she was back. “Here you go, dear. This tastes nasty, but in a minute or two you won’t care.” She handed Dagmar two evil-looking cups of goop. “One is the happy juice, the other is grape juice to wash it down with,” she said. In two happy gulps Dagmar had the evil-looking cups of goop down her gullet. “In just a few minutes the anesthesiologist will be here to go over the details with you,” the nurse-type lady said, bustling out the door.

We sat there for a few minutes, Kriemhild, Dagmar and myself, fidgeting, saying things like “I’m sure everything will be okay,” and “they’re sure nice here,” and “I’m sure everything will be okay.” Dagmar would intersperse every now and then with “I really like these drugs they gave me,” and “Vow! These drugs nice are sure good I like,” and the occasional mumble-mumble-giggle-mumble.

The door burst open, revealing a very buff-looking six-foot-two blonde man with an easy smile. “How is everyone today I just need to talk to Dagmar are you Dagmar how are you today Dagmar I’m your anesthesiologist I need you to take a few deep breaths,” he said in one big blurt, waving his stethescope in Dagmar’s general direction. Dagmar looked at the very buff-looking six-foot-two blonde man, sighed and smiled. “Vy yes, I’m Dagmar,” she said, breathing deeply, heaving her busom in his direction.

He listened to her boobs for a few seconds. “Okay,” he said “I need you to stick out your…” Dagmar pulled her robe down a bit and waggled her cleavage at him, giggling. “Tongue,” he continued.

After a bit, the very buff-looking six-foot-two blonde man asked if Dagmar had any allergies. “Yup,” she giggled. She then listed off almost every drug ever invented. “Okay,” said the guy. “I guess all I can really do is send you home with some nice Ibuprofen…” with that he bustled out the door.

“Vow,” said Dagmar. “Dese drugs I like happy happy wheee!”

Seconds later the doctor showed up. “Hi Dagmar,” he said. “How are you doing?”

“Blik aargoooie mang dipt,” Said Dagmar. She picked up the stethoscope that was dangling from the doctor’s neck and verys seriously intoned “Flooo bink?” into it.

“Okay,” said the doctor. “Let’s go!” He turned and headed on down the hall. Dagmar followed, making airplane “zoom zoom” noises. Kriemhild and I headed after them.

“No,” said a nurse. “You two don’t get to go watch. You have to go sit in the lobby, over that way.”

“Can I have a lollipop?” I asked. “I’m really nervous. Maybe you could give me some of the stuff you gave Dagmar?” The nurse didn’t bother to answer, she just pointed to the door. “Okay,” I said. “Fine.”

An hour and a half later, a nurse-type lady came out and asked Kriemhild and I to follow her. “You guys wait in here, and the doctor will be right in to talk to you. Dagmar’s in the recovery room, doing fine.” With that, she bustled out a different door.

“I’m nerfous,” said Kriemhild. “I hope everyting vent okay. It took too long.”

“I think she’s fine,” I said. “They said Dagmar’s in the recovery room, not ‘The body will be held for autopsy.’ That’s a good sign.”

After a few minutes of fidgeting, the doctor appeared. I could swear he came out of the closet. Why a room the size of a bathroom needs three doors is beyond me. Anyway… “Well, she gave me quite a workout,” he said. “But it all turned out okay.”

“Vy did it take so long?” asked Kriemhild.

“Here’s the story,” said the doc. “I made an incision and inserted the scope. As I kind of expected, there was a lot of scar tissue there from her previous operations. Her bowel was stuck to the wall of her abdomen, so I had to fix that. Then I found some more scar tissue, so I fixed that.” He pointed to what I had assumed was a piece abstract art on his clipboard. “Then, as you can plainly see,” he pointed at a goopy bit on the picture, “I noticed that she doesn’t have a gall bladder. I assume that’s on purpose?” We nodded. “Good,” he said. “They don’t often fall out on their own. Anyway, there was a lot of scarring there. Then I got to the right ovary, where the cyst should have been.” He pointed at another goopy bit on the picture.

“Should have been?” I asked. “Huh?”

“Well, he said, “We looked at her right ovary, and it was fine. No cyst, nothing. Then we noticed something BEHIND her right ovary. We were a little surprised – it was her left ovary.”

“Hmmm…” I said intelligently. “Oh. Hmmm…. You DID go to school for this, right? Like, for a long time?”

“Anyway,” he continued, ignoring me, “it turns out that her left ovary was the one with the cyst the whole time. It just happened to be on her right side for some reason. Her uterus was twisted up pretty good, too, so we fixed that, then we took the left ovary out, poked the right ovary back into position, fixed some more scar tissue and here we are. Any questions?”

“Yes,” said Kriemhild. “How far apart are ovaries, normally? How did her left vun get over by her right vun?” The doctor held up his fingers about this far apart. “The ovaries are only this far apart,” he said. “Just a few inches.”

“You’re kidding!” I said. “The pictures they showed us in third grade made them look really huge. Anyway, how is Dagmar? Will she need hormones or anything?”

“She’s fine,” the doctor said. “Her right ovary should be able to make all the hormones she needs. Um… I wouldn’t plan on having children though.” He then went over some other goopy details that I’ll spare you.

Kriemhild and I went outside to call some people and wait for Dagmar to wake up. After a considerable amount of time, a nurse-type lady found us. “Dagmar’s awake,” she said. “She’s drinking some nice 7-Up.” So, we all trooped into yet another little room where Dagmar was laying back in an easy chair, one green eye open. “Gurf?” she said. “Iggle vump.” With that, the eye closed and the snoring started.

Around five o’clock, Dagmar’s friend Marilyn showed up to see how things were going. “She’s sleeping nicely,” Kriemhild said. “It’s good dat dey let her sleep.” Marilyn agreed, I nodded somberly and Dagmar snored. “So many places, they don’t let a person sleep,” Kriemhild continued. “They just come in and vake them up right avay. A person needs to sleep after an operation.” She was interrupted at that point by a nurse-type lady. “I’ve just come to wake Dagmar up,” she said. “We can’t let her sleep the whole day away…”

“Dagmar,” the nurse-type lady said. “DAGMAR. It’s time to start waking up.” One green eye opened and slowly focused on the nurse-type lady. “You need to wake up now,” the nurse continued. “I need to see both eyes open.”

“Bitch,” said Dagmar, one green eye focused on the nurse-type lady. Marilyn stifled a laugh. Kriemhild turned toward the corner, giggling. I hung my head and concentrated on unfunny things. That’s when I noticed that after two hours of lying perfectly still, Dagmar had finally managed to wiggle a little. She had made a fist, leaving one finger sticking up. Dagmar must have been proud of it, because she made sure to show it to the nurse-type lady. I guess the nurse-type lady wasn’t too impressed. In fact, seemed to get much grouchier at that point. Within minutes Dagmar was up, padding up and down the hallway in her little robe. The nurse-type lady read off a list of things Dagmar could and couldn’t do. “Don’t let her take a shower today, she can take off her bandages tomorrow morning, she can have some toast and soup tonight for supper, no sexual relations for two weeks…” “Bitch,” I said, both eyes focused on the nurse-type lady. “No one told us that BEFORE the operation. That’s not fair!”

Anyway, to make a really, really long story merely tedious, Dagmar’s home now, and is feeling surprisingly good! Usually after any kind of surgery she’s in pretty bad shape, but this time she’s already had a few meals, passed gas (the doctor seemed to be concerned about that – “Don’t let her eat until she’s passed gas,” he said – so when she tooted this morning we held a toot celebration), and is happily pestering the cat. She’s rather stiff and sore, but not too bad. Hopefully she’ll be able to go back to work next week sometime if she wants (or if she wants to take a few days off, she should be able to enjoy them rather than laying on the couch moaning in pain). So we’re all happy!

Have a happy day!
Chris