Tuesday, June 19, 2012

MORE


In my last blog entry, I neglected to thank all those friends who came to see me while I was in the hospital and rehab center. In each, I felt like a stranger in a strange land, dressed only in a shapeless hospital gown with my no-butt butt hanging out the back. It’s interesting how quickly one looses one’s modesty under such circumstances. Visitors are a reminder of that other life we lead, from which we are temporarily divorced and to which we hope to soon return and are a much needed breath of fresh air. One of my guests even went so far as to suggest that my room in the rehab center needed some decoration, and brought on a subsequent visit a lovely plant and a small lithograph. How thoughtful!

It also occurred to me that I should have included the current outcome of my time incarcerated in our Great American Health Care System. My spine specialist, seen almost immediately after leaving the rehab center, x-rayed my lower spine, told me to throw away the brace and come back to her in 30 days when the compression fractures should be healed. Just don’t lift anything heavier than 20 pounds. Although my lower back aches most of the time and I take many seated rests during the day, I’m optimistic that when the fractures have healed, the aching will go away and I won’t need any further treatment. I saw my primary care physician – although I had to wait two weeks for an appointment – and he took over management of my various ailments as I had wanted him to do. On the presumption that my dizziness was actually caused by temporal, positional vertigo (although that had never been diagnosed), we discontinued my meclizine and the dizziness has not come back. Thank God for that! My doctor also referred me to a neurologist for consultation on the neuropathy in my feet. Of course his first free appointment slot is in the latter part of August. Meanwhile, I’ll continue to take the neurontin we presume at least lessens the pain. The pain in my gut continues but we presume it to be only sore muscles from my various falls combined with the traditional and ever present grumblings from my irritable bowel syndrome.

My physical therapy team, both Mary Sue in the rehab center, and Jason in my out-patient center, have each recommended – no, insisted – that I throw away my Crocs. They tell me Crocs provide absolutely no support for my feet and that my various falls in the last year are probably due to my stubbing my left toe and then losing the balance I might otherwise have with studier support. This is hard news. I’ve worn nothing but Crocs for years and as a result they have become a kind of signature, a trademark for my personality. Following their advice, I bought a new pair of sneakers that are comfortable enough in size 12, but hard to drag into and out of my car in that small crack allowed when the door is open. Parking slots do not provide enough room to make getting these gunboats in and out easily. In one recent case, I had to take the shoe off in order to get my foot through the small crack in the door. I guess this is a small price to pay for more support that might prevent another fall. I’ve stacked the Crocs in my closet but I haven’t yet passed them on to Goodwill or thrown them away.

All in all, I’m grateful to be recovering. It has been a very long six months. I can walk now without assistance (although not yet very fast, very far or for very long), drive my car and generally go about my usual routine. I’m not yet ready to stand long enough to prepare a dinner or brunch and so have not yet resumed my entertaining. I hope my friends will understand that when I do I may serve them a meal of Popeye’s fried chicken, cold slaw and a corn pudding. I think I could probably manage that.

Finally, my trip through the Great American Health Care System reminds me of the many years my aging mother spent in this strange land and has given me at least a glimpse of what lies ahead in my future. It’s not a pretty picture.

Stay tuned.









Monday, June 18, 2012

Monday, June 18, 2012A Trip to the Hospital


Because surgical replacement of my left knee five years ago went so smoothly and I recovered so quickly, I expected the replacement of my right knee, performed in the middle of April, to be equally benign. Wrong! My surgeon patiently explained that every knee is different and it soon became apparent that this one was not so happy to be sawed away and replaced by a shiny, new titanium device. I experienced more swelling and more pain, accompanied, strangely, by insomnia, which I’m told is normal after knee replacement but for which I was totally unprepared. Of course The American Way of Pharmacy came rushing to my rescue with two powerful drugs, one for pain and the other for sleep. Both were prescribed “as needed,” a license to take them whenever I thought it necessary. After surgery, happiness is having good drugs. Get well soon!

In the first week after surgery, when under the supervision of Stanley, my Slave-Driver-at-Home-Physical Therapist, I realized while doing heel slides, an exercise designed to increase my new knee’s flexibility, that my right heel was numb. I couldn’t feel anything. I was surprised but I didn’t worry. Like so many of us, I thought of it as just one of those things that would eventually go away. But it persisted and by the end of each day, the numbness would tear my attention away from The Evening News by spreading throughout my foot, and seeming determined to meld with my knee pain, it would begin to creep up my ankle and shin. It was very insistent. But I had a remedy. Gulping down my good old Tramadol dulled the pain so that it was bearable enough for me to go back to television. And then, when I went to bed only a few hours later, without realizing that the combination was dangerous, I took my ambien for a good night’s sleep. As a result of the power of these two narcotics, I fell on three separate occasions while getting up to go to the bathroom during the night. The last fall was serious. I couldn’t get back up and had to crawl on my bleeding elbows to drag myself from the bathroom back to my bedroom. In typical Harriet Craig fashion, I worried more about leaving a trail of blood on the carpet than I did about how I was going to get back up onto the bed. For a moment, I considered just lying there on the floor but decided I didn’t want to be found that way in the morning so summoned all my energy and cunning and managed to get back into bed. It was not an easy Friday night!

On the next Sunday morning, I awoke dizzy, so dizzy that it was hard for me to function. I skipped my usual breakfast at Jimmy’s so those of you who know me well will understand that the dizziness was seriously debilitating. This, too, will pass, I thought. But I was wrong, and finally, about noon, admitted that I had to go to a hospital. I didn’t want to call 911 because I knew the city ambulance would take me to Baltimore General Hospital, nearest to where I live, and a hospital with a very poor reputation. Or maybe it’s just bad karma. One of my friends had died there. So I began to call people for a ride, but it was such a beautiful day that all of my usual friends were outside, in the sun, and my phone calls to them for help went unanswered. After trying at least eight people, including all those who had said, “If you ever need anything, anything at all, just call me,” I finally found a friend at home who rushed to my rescue in his new Bentley and took me to the hospital where the knee replacement had been performed. (I wanted to be sure that falling hadn’t damaged the mechanism of the new knee.) I have to admit that despite the pain and dizziness I had a hearty chuckle driving up to the emergency room in the front seat of a Bentley instead of in the back of a Baltimore City ambulance. But thus, by going through the doors of the hospital’s emergency room, I entered the much vaunted American Healthcare System. Well, not so easily. While I was dizzily struggling on my walker toward the inevitable sign-in sheet, an African-American woman rushed by me, almost knocking me down, in her haste to be processed before me. It is said that competition is good for the enterprise.

So My Very Long Wait began at about two o’clock on this beautiful Sunday afternoon and was punctuated only by a few minutes to verify that I indeed had insurance – they won’t even talk to you without it – to take my medical history and to verify a list of my medications. When I finally saw a doctor, many hours later in a tightly antiseptic examining room, he asked me what had happened and I told him: knee replacement surgery, falling several times, neuropathy in my foot, dizziness, some pain in my lower abdomen and lower back. He was clinically absorbed but not particularly sympathetic. With my history of pulmonary emboli, and because I had a huge bruise on my forehead where I had fallen, he sent me for multiple CT scans: of my chest and head. More waiting for the machines to be available. Then more waiting for the results. Finally, after hours in my little room, with my poor driver-friend struggling unsuccessfully for comfort on the only, hard chair in the room, the doctor returned and told me he wasn’t admitting me. What? My friend and I were both incredulous. “Why not?” I asked.

He explained that every emergency room has a Lion at the Gate, someone with a green shade on his – or in this case, her – forehead who went over all the records of incoming patients to see if the preliminary examination produced facts that would enable the hospital to justify charging Medicare for that patient’s stay. My records did not. “How come?” I asked.

“Well,” the doctor said, “you have a whole host of symptoms with no underlying cause that we can see. And none of your symptoms justifies hospitalization.”

“But,” I complained, “if you send me home in this dizzy state, I could fall and do some serious damage, like break a leg.”

“Ah,” he said. And this is a direct quote, “They want you to break a leg.”

“What?” It seemed incredible, not only what he said but also that he had said it.

“That way,” he said, “when you return with your broken leg, you’ll have something we can readily treat and we won’t have to justify a borderline situation to Medicare.”

“I’m not happy about this,” I said. And I went on to protest mightily about the Lion at the Gate’s decision. Finally the doctor said he’d go back to the Lion to ask her if I might be admitted for observation. He explained that if within 24 hours, further examination could find something the hospital could treat, I’d be admitted. And if nothing became apparent in that period of time, I’d be discharged. With my agreement, he left me again, to go back to the Lion. Another long wait began.

Finally, about 10 o’clock that night – I’d been in the emergency room now since two in the afternoon – the Indefinite They (whoever that is) found me a bed and I was wheeled away from the emergency room and up into the bowels of the hospital to a regular room, leaving my poor friend with a terribly aching back to finally leave me and return home. And thus, by entering room 509B, I began The Great American Hospital Experience.

I don’t remember much about the next five days in the hospital. My sister in Colorado, once told where I was, called me, sometimes twice a day and said that in our conversations I slurred my words. So I guess I was pretty heavily sedated on dilaudid, an injectable pain medication prescribed on an “as needed” basis by a hospital doctor who was apparently taking care of me but whom I never saw. And I needed this dilaudid a lot for pain, especially at night when the neuropathy in my heel spread to the rest of my foot and eagerly crawled up my ankle, still determined to merge with the pain in my new knee. When combined with ambien, given to me at night for insomnia, dilaudid made everything in my field of vision just melt downward, dissolving into icicles of reality. Lovely, but also a little scary. I was also given meclizine for my dizziness – no one seems to know why it works - and neurontin, an opium derivative used to prevent seizures, for the neuropathy in my feet. Happiness is drugs. While you have them, enjoy what you see. .Just don’t slur your words.

I do remember being transported to different places in the hospital for tests: CT’s, for my head (to be sure I didn’t have a concussion), of my chest (to rule out a pulmonary embolism – I’ve had two), and x-rays of my new knee (to be sure I hadn’t damaged the mechanism). These tests showed some problems that prompted an MRI of my brain, which showed a “subacute infarct in the left paracentral area of my brain,” or in other words, a non-acute stroke, thought to be the cause of my neuropathy, and two compression fractures of my lower spine, on L-1 and L-4. I remember the two-man team that patiently tried to lower me onto the MRI table without success. The pain in my back was just too powerful. I had to wait until the next morning when, with the help of my morning dose of dilaudid, I could finally lie down for the test. I also remember a man coming into my room and measuring me for a brace designed to prevent further damage to my spine. It was a complicated and ugly rig of plastic forms, straps and Velcro closings that completely encased my upper body, with circular projections in the front that pushed on my chest to prevent bending. I was admonished to wear it any time I was out of bed. It made me look like a praying mantis in a Star Wars movie. I stayed in bed a lot just to avoid wearing it. I also remember guests, friends who came to bring me essentials from home – underwear, shaving cream, toothpaste, a good book – and try to cheer me up. It was a very emotional time for me. While I’m sure I was receiving excellent care, everything felt out of control, people coming and going, giving me drugs or designing a brace, no one telling me anything about the overall picture or explaining what the tests had shown. I never saw a doctor, only nurses, nurses’ aids and the lady who cleaned my room twice a day. I felt overwhelmed and inclined to tears. I remember a kind woman who came into my room and explained that she was with the “spiritual staff” of the hospital. Did I need any spiritual counseling? Oddly, the dam broke and I began to weep. She came over to my bed and just held my hand, a gesture that meant the world to me. How comforting human touch can be, especially when we don’t get it very often. When I got myself under control, she said she was going to mass and would stop in on her way back. What was my favorite color? I told her it was turquoise. When she came back, she gave me a beautifully crocheted prayer shawl in shades of turquoise, knitted by the women’s auxiliary of the hospital for patients who, like me, needed a little manifestation of help from God.

With the administration of these few tests and remedies, the hospital decided it couldn’t keep me any longer; there was nothing more their staff could do. I suppose the Lion at the Gate had a hand in this decision. So on Thursday, the amorphous they said they would move me to a rehabilitation facility. Where did I want to go? I had no idea, so I called my primary care doctor for his recommendation. He told me of a rehab facility in Mays Chapel, the only one he knew. And he signed off by saying, he would be in his office on Friday, but then gone for the three-day Memorial Day weekend, and good luck. It wasn’t a reassuring conversation. But knowing nothing of rehab facilities in the Baltimore area, I took his recommendation, the facility had an open bed, and I was strapped into a wheelchair and into a minivan and transported to the facility - $35.00 please, charged to my Visa card, and thank you – feeling very old and feeble indeed. Not a happy feeling.

At the rehab facility, I had an almost immediate run-in with the staff. My doctor in the hospital had said that since dilaudid was an injectable drug, which couldn’t be administered at home, we should find some other drug that could be taken by mouth. How about oxycodone? That was fine with me. However, when I got to rehab and asked, early in the evening of my first day, for some pain medication, the nurse told me that none had been prescribed. She could see that the dilaudid had been scrubbed and oxycodone added but my records also showed an allergy to codeine, an element in oxycodone so it, too, had been eliminated. Further, the pharmacy that served the rehab facility had made its last delivery for the day so I would have to tough it out for the night. She was sorry. I must admit to not being very kind to her. I was tired and confused and in a lot of growing pain and just lost it. I was not allergic to codeine; how did they get that impression? I was in pain and I needed medication. I didn’t care if the pharmacy had made its last delivery. Get in a car and go to the pharmacy yourself if necessary! Surely in their ample supply of medication they must have one oxycodone somewhere in the building they could give me. She was supposed to be taking care of me. Do something! She left to try to find a solution and about an hour later, I got my oxycodone, at some considerable cost to my reputation.

This run-in with the staff got me off to a bad start and those taking care of me avoided me as much as possible. One day I was taken by wheelchair to a room with a complicated scale that could weigh me in the wheelchair. In maneuvering me around to fit it onto the scale, the nurse pushing my wheelchair punctured a spot on my bare leg with a nasty pointed projection on the scale. My leg began to bleed, the blood running down into my sock. But the staff was concentrating on the scale, not my leg, and it was several days before a doctor noticed the spot and had a nurse clean it up and cover it with a band-aid. It was almost impossible to sleep. The staff turned the lights out in my room at about 8:30 and expected me to sleep. But the phones kept ringing at the nurses’ station, brang, brang, brang brang, brang brang brang, brang. Thank God for ambient! One night the nurse asked Ed, my companion in the room, a man about my age who had taken a pill he shouldn’t have had and had three strokes on the way to the hospital, if he wanted his sleeping pill now or later. “Now, please,” he said. The nurse left. A half hour later, he asked for his sleeping pill again and the nurse said, “We can’t give you any sleeping pills until after nine o’clock.” I wondered why they’d asked him if he wanted it “now” if it wasn’t possible to give it to him then.

On one of the first nights I was there, boxed in by a curtain separating me from Ed in the other bed in my room, I awoke at about two o’clock in the morning to some vague mumbling. A hand appeared on the railing at the end of my bed, followed by a ghostly lady in a wheelchair, obviously lost and wandering. As much as I could tell from her rambling to herself, she was focused on her brother who had taken all her money and no longer brought her coffee and doughnuts when he visited. She started to cry just as an attendant found her in my room and wheeled her away. Raising her arm and pointing her index finger upward, she looked at me and muttered, “You see what I mean?”

And then there was the pill controversy. One morning I was sitting on the john in the bathroom when there was a knock on the door. I opened it a crack to see the pill lady with the little plastic cup of my morning pills. By this time, I was cogent enough to wonder what they were. So I asked if she knew? She closed the door and said she would be right back. I finished in the john and went back to my bed. The pill lady came in a few moments later and asked if I’d taken my pills. I told her I had not. “Well, dey were right dere on dee table. They not there now. So you must have taken them.” All of this was delivered in a Caribbean accent that made it hard to understand.

“I’m sorry,” I said, “but there were no pills on the table.”

“Yes. Dey was. I left dem dere. Right on de table! You took dem!”

“I assure you that I didn’t. There were no pills on the table, and I haven’t taken them.”

Angry now, the pill lady began to look around my room to see if she could find evidence that I’d taken my pills. She found a little plastic cup on the window sill, left over from some other pill time and seized on this as evidence that I’d taken my pills. “See here,” she said, triumphantly. “Here’s dee container. You’ve taken dose pills!”

At this point, my patience ran out. I assured her that she had not left the pills on my table, I hadn’t taken them and that the container she was holding as evidence was left over from some previous time. She reacted with anger and stomped out of my room. About an hour later, a different aide brought me my morning pills.

But that was not the end of it. A day later, the original pill lady came into my room and confronted me about the pills. “Why you say you not take dem?” she practically screamed at me. “Now I have to go downstairs to de boss’s office to esplane myself. You jess get me in de trouble! Why you do that?! But no amount of patient reconstruction of the morning, nor explanation that I hadn’t taken my pills, calmed her down. Finally a nurse came into my room and took the pill lady away. I was sorry to get her in trouble but I knew (from previous experience with my mother in a nursing home) that in order to enforce strict administration of medications, the pill lady is supposed to hand you the plastic cup containing the pills, wait to see that you swallow them, and take the plastic cup away.

After these several run-ins with the staff, I began to feel alienated from the circumstances, almost as though my body was there in the bed, but my mind was elsewhere, looking down on this pathetic situation. Meanwhile, my sister had been calling me every day, always asking how I was and wondering what she could do for me. Should she come to be with me? I assured her that I didn’t need that. But finally I told her it would be a great comfort to me if she would shake up the place by calling the head honcho and trying to get an overall picture of what was going on and what plans the facility had for me. When might I go home? A psychologist with a doctoral degree, my sister has an air pf prestige I knew the facility would honor. They would listen to her. She told them I was not senile, that I had not taken my pills, that I had run a multi-million dollar company and should be participating in whatever plans the facility had for me. As a result, the honchos called a plan-of-care meeting for the following morning, with the staff gathered around and my sister on a speaker phone. We all agreed that the facility really couldn’t do much for me except give me some physical and occupational therapy and that I should go home as soon as possible. After that, the staff treated me differently and I began to joke with them in order to keep the happiness ball rolling.

When this saga all began, I had been in physical therapy for my new knee for a week or so. The knee was so surprisingly flexible that Jason, my PT guy, didn’t even need to work on that, but concentrated instead on increasing my muscle strength around the knee and on my balance, both needed to help me walk normally again. The focus of the rehab staff was on getting me ready to go home so Mary Sue worked mostly on balance. I was not very good at it at first but after a couple of sessions, I had improved enough for her to take me outside to walk on both the sidewalk and the grass, which is a bumpy, less steady surface. I progressed quickly. In my first occupational therapy session – designed to help me perform practical chores rather than just improve on standing and walking – I readily took clothes out of the dryer, folded them and put them away in a chest of drawers, made a bed (giving the final pillows a jaunty, casual air), got pots and pans out of kitchen cabinets and moved plates and glasses to the dining room table. Chanteuse, the OT instructor, a happy, dumpling sort of African American woman, asked me what I would be cooking. I demonstrated how I’d put lamb chops in the broiler, pre-boil broccoli and then sauté it in a little garlic and olive oil, and showed her how I could roast vegetables or potatoes in the oven. She was captivated by the menu and asked me for my recipes. So I did well in therapy right away, in the very first session.

By Tuesday – I’d been in the rehab facility since Friday – I was angling to go home. I could move easily on my walker and didn’t really see what more the staff could do for me. Susie’s call had encouraged them to take me more seriously and I had begun to joke with them and call them all by name. Anne, the Charge Nurse, a large and imposing African American woman with an identification card around her neck, and one of those responsible for making the decision to let me go, told me, for instance, that she was open to a bribe but she was very expensive. I promised her the best chocolate cookies in the world and she laughed and said that would do it. But the facility kept me for another day and finally let me go on Thursday morning. It gave the facility at least one more night to charge to Medicare.

And they put me through two more PT sessions, pumping up that expense as well. In my final OT session, the staff couldn’t decide what to do with me. I had performed the OT chores so well, there was nothing more for me to demonstrate. Since they had seen me lifting weights with my right arm while I waited for them to work with me – I’d had a bicep tendon surgically repaired in January and was just working on my own to keep that area flexible – the OT lady said I could just lift weights. After I got started on my routine, she walked away to talk to someone and returned to find me lifting them too fast. “Slow down,” she said. “We have to kill a whole hour.” Charge that up to Medicare!

Finally all the papers were signed – including a contract I insisted on reading that made me responsible for everything if Medicare didn’t come through – by all the appropriate honchos and I called a friend to come pick me up and take me home. What a relief to be in my own space and free, at last, from the Great American Health Care Experience.

One of my firmly held beliefs is that as any organization grows, it has a tendency to emphasize form over essence or, to put it another way, the activity itself grows more important than the objective. Call it Cooper’s Law. I suppose it’s a natural thing. If you don’t (or can’t) know where you’re going, you just keep driving. Or, if you’re job is to make frames for a sofa, you’re not focused on what the sofa may ultimately look like. In an age of specialization, we’ve lost sight of our purpose, how our particular part of something affects the outcome. If your job is to administer pills, you’re not concerned about the patient’s getting well, or going home. That was certainly true in my case. Each person who came into contact with me was a specialist in whatever he, or she, was doing. Oddly, and this was very debilitating to me, none of them was concerned with the bigger picture. And equally oddly, although there must have been a doctor somewhere who was acting as a general contractor, he didn’t consult with me or keep me posted. Even so, I’m sure I got very good care – the best in the world so the politicians say – but I’m also sure that my experience demonstrates how the third of our budget for health care gets wasted.

Just two more things about this trip. First, after I left the rehab facility, I immediately consulted a spine specialist about my back. I entered her office wearing my brace and she asked me what that was for. To keep me from bending over, I said. I had been told to wear it any time I was out of bed. Take it off and throw it away, she said. It wouldn’t do me any good. It was just another $800.00 Medicare boondoggle. And second, I did bake and deliver the best chocolate cookies in the world to Ann. She wasn’t working that day so the cookies went into a file in the Great American Health Care System. I’ve never heard from them again.

































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