5/2/14 Patient Advocacy Chapter 1

When you are a patient, who do you suppose is your best advocate? The clerks at the hospital admissions? The people in billing? In insurance? The folks in your doctor’s office? Your doctor? Nope. None of them. It’s most likely going to be you, and you will have to learn how to become one if you are not now, especially if you are gong to deal with the complex business of medicine, and for a fact, the business of medicine is obfuscating and perhaps intentionally so. The only thing more confusing than a bill from your hospital is a bill from your phone company, and there is absolutely no reason for it to be so, unless it is on purpose, since reading something as complex as computer code is not necessary for human communications unless one is intending for it to be confusing for their own benefit.

I have had a kidney stone lurking in my right kidney for the last couple of years. Every Computed tomography (CT) scan I had done because of the leukemia has a note from the radiologist that read, “Stable 2mm renal calculus noted in right kidney.” “Stable” and “2mm” were good, though the fact that it was even there was bad. This stone was last observed and commented on on a CT scan done December 28, 2013. Sometime since last December and now it became unstable, growing, and was soon to reveal itself in some way besides in a CT scan. It would make itself known. It would make itself unignorable.

On April 16, the day after I painfully mailed off two checks, one to the IRS and the other to the great state of Mississippi, which bears a certain similarity to passing a kidney stone but not quite, I noticed a dull, thudding ache in my right kidney. Shortly afterward, a trip to the bathroom revealed some pinkish urine. Well, we all know what color our urine should be, and pink is not one of the authorized colors, so this meant that there was more than a little blood in my urine. Being a veteran of kidney stones, I knew what this meant: the stone was no longer stable but moving around in my kidney, passing among the capillaries and blood vessels that traverse the kidney so the kidney can do its job of filtering my blood, removing the toxins, dead cells, and other things that would poison my blood without them. We need our kidneys. What we don’t need are stones in them.

“It’s only a 2mm stone,” I said to myself. “This shouldn’t be too bad.” I said this to myself because of previous experience with stones, some in excess of 10mm. Consequently I went on about my business, wondering when the other shoe would drop and not thinking too much about the dull ache in my side. When you get closer to sixty than to fifty, you have dull aches that are either permanent, or pop up from time to time, and you can’t pay too much attention to them; you simply get used to your new normal and get on with whatever is at hand since you can’t just take to the bed with every ache and pain.

In the wee post-midnight early morn of Tuesday, April 22, things changed. The stone was no longer moving around aimlessly in my kidney. It had hit the magic drain point and was entering my ureter, the tube that runs from the kidney to my bladder. This tube, by a meanly ironic twisted design of nature, is very small but very long, being a good eight or nine inches from your kidney to your bladder. If it were a drinking straw, it would be much more akin to the little-bitty hollow straws used to stir coffee that you get at a fast food place than to the straws used to drink soda. I think this is a mean and low-down way to have implemented this plumbing system. Oh…it works fine as plumbing that handles nothing but liquid, but for a fact, the delicate drainage system is not designed to handle any solids.

I was sleeping as well as I have ever slept, enjoying vivid dreams, but eventually dreaming that I was in a mixed martial art fight, and that Chuck Norris, after having suffered some terrible blows delivered by my thunderous straight right hand, had thrown me to the mat and had me in a position where I was helpless as he delivered dozens of hammer fists to my right kidney. I my dream, I was in excruciating pain as Chuck hammered away. In my sleep I reached for my back, just as in my dream I reached back to try and shield my kidney from Chuck’s relentless blows. In my dream I tapped out and the referee stopped the fight. In real life I woke up groaning. Chuck was gone, but the hammering in my kidney was still there. I admire Chuck Norris, but I do not appreciate him waking me up so rudely then vanishing as if he had never been there. I groaned two or three times, then rolled out of bed gingerly, stepping as awkwardly as a cat with scotch tape on his feet, took about two steps, sank to my knees, rolled onto the floor, curled up in a fetal position, then groaned, moaned, or wailed, I’m not sure which, loud enough that Debbie came out of her hat room into our bedroom, switched on the light, and found me there curled up on the floor.

“Chris, are you OK?” she asked, as if me groaning, curled up in a tight fetal position on the floor was only a slightly irregular occurrence. She had seen it before.

“Just chipper,” I shot back, forcing as much irony in my voice as I could. “Hell, no, I’m not OK. Kidney stone. Shoot Chuck Norris before he gets away,” already delirious with pain, unsure whether I was still dreaming or was unfortunately awake. I was awake. Chuck was not there. It was just me, Debbie, and that 2mm stone.

I am a veteran of kidney stones. I am not a novice. I do not suffer with them as some people do, but every few years one crops up. The last one caused me grief for about two days, then I passed it. A previous couple did not pass, just as if Middle-Earth‘s Gandalf was standing at the bridge deep in the bowels of the Mines of Moria, perhaps where the Ureter river crosses into Bladderland, then strikes his staff against the stone bridge, declaring to the evil Balrog before him, using his most authoritative wizard voice, “YOU SHALL NOT PASS.” And they didn’t. Neither did the Balrog. Both he and Gandalf plunged into the dark abyss. I merely plunged into agony.

This is what they make lithotripsy for. Sound waves are focused and passed into your body that do not damage soft tissue, but will break the stone into small bits, getting rid of the Balrog that will not pass, turning it instead to a million little orcs, each causing their own bit of pain as they pass, but still able to pass, as the Balrog has been dramatically reduced and Gandalf has been reassigned, no longer needed to guard the opening into my bladder.

If you never read THE LORD OF THE RINGS or saw the movies, then you have no clue as to what I am referring to. If you don’t know Gandalf or Balrogs, or the Mines of Moria, google them for yourself. A kidney stone and a Balrog are an appropriate comparison I think, and I am qualified to think so, though I have never encountered a Balrog. If you aren’t sure, you can take my word for it. When you encounter your own personal Balrog, you will instantly be able to make a similar comparison. You have been warned.

Interestingly, the ancient Greek word for kidney stones is bezoars…which is wickedly similar enough to balrog to be more than coincidental to me.

Being a veteran of these campaigns, I am not without some resources, nor some defensive weapons: I keep a stash of dilaudid (hydromorphone) in my gun safe. Dilaudid is a Schedule II Controlled-Substance narcotic, a synthesized heroin-like drug, and a powerful pain-killer, much more chemically similar to heroin than it’s less synthesized sister, morphine. It is not to be trifled with as tolerance builds up very quickly, and no human being on earth has the ability to avoid developing a physical addiction if they do not use it sparingly and treat it as the medicine it is. It is prescribed sparingly by physicians, used mostly by Oncologists and Urologists, the former to allow patients in their final days to be comfortable as the time of their death draws near, and the latter so that the patient will not seriously contemplate the idea of death as a suitable alternative to an invading, malevolently balrogish bezoar. I am as stingy with their use as a human being possibly can be, because if I take it, then I won’t have it, and if I don’t have it, then I can’t take it when I really need it. I’d rather have it and not need it, than really, really need it and not have it…thus the secured stash.

The dilaudid I have is left over from previous kidney stone episodes. The thirty mile drive, or ride in this particular case, from my house to the emergency room is bearable under the drug’s influence, but I was determined to wait it out as long as I could. At 12:30AM, 4/29, I took a 2mg dilaudid. The sharp pain stopped about twenty minutes later as the dilaudid took effect, turning into a dull thud that matched my pulse beat rather than the Chuck Norris pounding. By 4:30AM, I had had enough, took two more of the pain pills, woke Debbie up and said, “I’m ready to go to the hospital.” Off we went. I was unable to drive myself, lapsing into the stupor of the dilaudid but being constantly roused by every bump in the highway, crying, “Owwww!!!!”

They checked me in to the hospital ER, which is simpler than checking in for a routine X-ray (more about that later). At that time of the morning, there was no one there, and they brought me right in. Dr. Cady is one of the full-time ER physicians at Anderson Regional Medical Center in Meridian (not to be confused with MDAnderson Cancer Center in Houston where I am also a patient). Dr. Cady and I remembered each other.

“You’ve been in here before with kidney stones,” he said.

“Yep,” I replied.

“Well, let’s get you off to CT and then we’ll get you some relief,” he said. I’d rather had the relief first, but these days, hospitals must have confirmation before they disburse the narcotics since ERs are inundated with addicts offering any excuse for a pain shot.

Off to the Radiology department I go for a CT scan and a regular X-ray. After a brief sojourn there, I was returned to the ER. The nurse came into the room. I immediately told him, “OK, we’ve been through all that, now I’m ready for some relief.”

He said, “Mr. Sharp, I’m here to get your IV started and get you some pain medication underway.”

“Dilaudid!” I said…demanded, really.

“Yes,” was his reply.

“Bless you,” I said, sticking out my arm, waiting for the needle.

In just a few minutes, I was transported to Eden. Chuck Norris and I were soon having a friendly conversation under the shade of an apple tree, as he and I and Isaac Newton were eating fresh apples that had fallen to the ground. Chuck was apologizing to me for the pounding, Isaac was contemplating the apple he held in his hand as he looked up at the tree, and I was barely aware of either one, much less the people in the ER. Then, I went out like a blown light-bulb. “Bliss is nothingness,” said Gautama, and it was a temporary bliss I had achieved. After an hour or so, Dr. Cady roused me and told me I had a 5mm stone about one inch down inside my ureter. He had seen Uroman, my regular urologist, at the hospital since he was there for early morning surgeries, and set up an appointment for me at 9:30AM that Friday. With that, I was released to go home with a prescription. Chick Norris was a memory. The dull ache was a memory. The euphoria I was in was not yet a memory, but still very vivid. I only felt a pulse beat where I had once felt the fist of Chuck Norris. I would have been able to sing like a mockingbird had someone dared me to.

The hospital shifts had changed and a new nurse came to ask me if I needed a wheel chair or was I able to walk. “I can walk,” I said.

“Are you sure?” she asked. “We don’t want you falling.”

“I’m OK.”

She and Debbie went out of the room and I saw Debbie going down the hall to the east. I walked down the hall to the west, exited the ER, and went outside and sat down on the bench waiting for Debbie to come pick me up. I was sitting there admiring all of God’s creation in a pleasant mood of peace and joy. I was watching all the people coming to and fro as it was now nearly 8:00AM and the hospital was teeming with all the activities that keep it going. Apparently, they thought I was lost. Remarkably, I knew right where I was, just sitting on the bench outside of the same door that I had used to enter the ER. There must have been some small panic on behalf of the hospital ER staff when I was not to be found. Debbie was waiting for me at the ambulance entrance of the ER, and I was sitting at the opposite end at the ambulatory entrance of the ER. There is quite a difference between ambulance and ambulatory, and I had noticed that it was taking longer for Debbie to come and fetch me than I thought it should, but I was content to just sit there. They would find me.

The nurse burst out the door, crying. “Oh! Mr. Sharp. I am so glad I found you. You were lost. Are you sure you’re OK?”

“I’m fine,” I said with a shrug of my shoulders. If I had been any finer, I’d have been floating above that bench.

“You were supposed to follow me and go out the other entrance where your wife was waiting,” she said.

“You should have told me that,” I said.

“I did,” she said.

“No, you must have told Debbie. You didn’t tell me anything, you just asked me if I could walk,” I replied. “I came out the same door I went in.”

“We were afraid in your confusion you had gotten lost,” she said.

“I am not confused, nor was I lost for an instant. I know exactly where I am, can recite at least the first half of the Declaration of Independence, recite the entire Rime of the Ancient Mariner, a significant potion of Paradise Lost, even count by prime numbers at least into six-digit figures, or even explain to you the significance of the square root of three. I am not confused at all, in fact, you seem a little rattled to me.” I smiled the most joyful smile I could muster, which at that moment was pretty joyful.

“I was, because I lost you,” she said, still looking at me with suspicion and not the slightest hint of amusement.

“Then, it is settled. You lost me. I was never lost for an instant,” I smugly retorted. She had no sense of humor, it seemed, or my humor was lost on her. She was relieved, though, since I had apparently violated hospital protocol, which would have far more impact on her than on me. I would have followed her directions had she made them clear to me.

“Are you able to walk with me around the corner to where you wife is waiting for you in the car?” she asked.

“Sure. But why not just send my wife around the corner to pick me up here? I am content on this bench.”

She looked unsure of herself. She held her hand to her mouth as she pondered, wondering, perhaps, how this would affect her if something went wrong now since I was not in the appropriate place for a discharge from the ER. I relieved her of her worry. “I walked in here through this door, and I walked out of here through the same door. Go and fetch my wife. I will stay put and be right here on this bench. I will not move.”

“Are you sure you’re OK?” she asked again. Apparently she thought I was not because I was not following orders. For me, this is normal operation mode, but she had no way of knowing that. She thought for a moment or two, her brow pinched like a spinster’s grip on and eligible bachelor, then said, “OK. But don’t you move.”

“Like the Balrog, I shall not pass,” I replied. She looked at me like I was crazy and ran through the door. I could hear her footsteps pounding to the beat of my pulse as every sound and every pulse beat was recorded in synchronization with the thud in my ureter, no longer painful, just a pressure, like the pressure of a tom-tom tapped with a finger,, not pounded with a stick…not like the sharp clop-clop of an iron-shod horse on rock, but more like the kawhomp-kawhomp of a mule’s hooves as he pulls a middle-buster through yielding earth that has been tilled for generations. One was sharp and cutting. The other, noticeable, but far less strident. I was content to sit there unless a wayward car came careening over the curb, which was just as likely at the west entrance as the east one where I was seated.

Debbie pulled around and the nurse helped me into the car, and we were off. I stopped by the office to pick up some paperwork, and we went home. I didn’t even need to rush to get the prescription filled because of the hoard I had at home from the previous episodes; tomorrow, there would be plenty of time for that. The rest of the day, I would drift in and out of sleep, awake to the occasional pain, but drift right back into the world of the subconscious, where I seemed to have very little to say to anyone.

“That was a pretty good lick to the jaw you gave me,” said Chuck, “but I had to beat you! Sorry!” Then he vanished.

“Hope that stone passes soon, then it you shall be rid of,” Winston S. Churchill, who nodding and tipping his hat said as he passed by, puffing on the cigar named for him, ending a sentence with a preposition. I just nodded my head. I would have tipped my hat but I wasn’t wearing one.

“It is your destiny,” said John Calvin. “God has fore-ordained it to be so.”

“Go away, Calvin,” I replied.

“Nay, Calvin, but rather, God has foreseen it,” argued Martin Luther to Calvin.

“Git! The both of you,” I shouted.

“What did you say,” Debbie asked, thinking I was addressing her, rousing me back to this world and the pressure in my side.

“Nothing. Nothing at al…….zzzzzzzzz” was all I could muster.

She gave me a loving stroke on my forehead, then turned and went back to making her hats, leaving me to the kawhomping thud of dreams.
Thus endeth Chapter 1, which apparently has little to do with patient advocacy, but I’ll get around to that soon enough. I had to set it up first.

The reader will determine later if his time has been well spent.

 

©2014 Mississippi Chris Sharp

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