Saturday, January 12, 2008

My Hospital Experience

English novelist, playwright, and short story writer, W. Somerset Maugham, wrote something that appealed to me often during my career as a Quality Manager: “It's a funny thing about life; if you refuse to accept anything but the best, you very often get it.” One corollary of that statement would be, “If you accept less-than-the-best, you will quite often get it.”

Thus starts the tale of my recent hospital experience.

Now, it’s hard to keep a timeline straight so don’t hold me to anything. I told you about Amy, my daughter, being home for Christmas, the finding of the swollen bumps near my implanted port, and the subsequent return of Amy and her “monsters” (the dogs) to her home in Tampa. So let’s start again on Wednesday, January 2.

BTW, here’s a photo essay of a port being accessed. The guy looks a lot like me only he has hair! Go with me to a chemotherapy session and that's what you will see them do to me.

I called the VLCC on Wednesday to explain the symptoms I had found, namely the soft “bumps.” Other than the lousy cough, which I attributed to a cold, I experienced no other symptoms. They invited me over for a look and I accepted.

While there, Nurse Practitioner Nancy ordered a sonogram, which revealed a blood clot in an artery leading to my right arm. They started me on Warfarin /Coumadin and Lovenox to thin my blood.

I returned the following Monday for a follow up and blood tests to determine my INR number, which would tell them how well my blood is coagulating, or not. My doctor-of-the-day, Dr. C., asked me why I was wearing a mask. I informed him that I had what I thought was a cold and that I was stingy and didn’t want to give it to anyone else, especially cancer patients with intentionally compromised immune systems. At the same time, I didn’t want to pick up anything else! He made me take the mask off.

I left the clinic that day continuing the Warfarin but not knowing what I would be doing about the Lovenox. Nothing was said about my cough. And I still felt like crap.

A Fatigue Factor (FF) of 10 would mean that I couldn’t get out of bed. An FF of 9 would mean that I could get out of bed long enough to get to the bathroom, the recliner, or the kitchen, but couldn’t stand for very long. I call it “Riding the Recliner” time.

I was somewhere around an FF of 6 or 7. I could get up and around a bit, do the dishes if there weren’t too many, but had to sit down soon. I could go to the store if I used a cart to lean on and didn’t get too many items. A quick in and out!

Tuesday, still feeling fatigued and with the cough, I decided on a reality check. I called my insurance company’s 24-hour healthcare hot line that featured real nurses. It took quite a while to bring Nurse Sheila up to speed with my conditions and how I got there. I informed her about my upcoming appointment with my Personal Care Physician (PCP) in the morning concerning my blood pressure.

She gave me some tips to ease my suffering, but made me promise “cross-my-heart-and-hope-to-live” that I would keep that doctor’s appointment.

I sometimes feel like a victim of Procrustes, who was a Greek robber with a famous bed. If you were too long for the bed, he amputated something so that you fit. If you were too short, you were put on the rack and stretched until you fit. For him, everyone had to be the same height, or else!

One of my favorite Jefferson quotes goes like this, “There is nothing more unequal, than the equal treatment of unequal people.” It would seem to fit with the Procrustes bed situation, and later, you will see, will be appropriate for my situation. And, if you get me drunk enough sometime and ask me, I might tell you how and why that quote appeals to me so much.

I went in early, before 8:00, to the VLCC to have blood drawn to test my blood clotting rate to see if the Warfarin was working. Even though I told them that I had an appointment with my PCP at 8:30 and had to leave by 8:15. they didn't get to me until 8:20!

While waiting, I found out that I had a 9:00 appointment there with the doctor-of-the-day, Dr. C. I told them that they had to tell me about such appointments and that they hadn't told me because if they had, I would have told them that I would be in my own PCP's treatment room at that time.

I walked out of the building at 8:25 at ABCMC. Six minutes later I was one quarteer of the way around Green Bay, slowing down to exit at GV only to find that the exit ramp was glazed over with ice, had been recently salted because two cars were in the ditch with two police vehicles warning other exiting drivers! It took me another 9 minutes to get the rest of the way to my doctor's office. Did I mention that I wasn't feeling well at all???

BTW, I finally got to meet the "Diane" who had cancer and was undergoing treatment as well whom I thought was so young because she kept calling me "Sir." She's not as young as I thought. Her teenage son had just returned from a trip to France with the exchange student they had had living with them! I told her if she ever wanted to talk and compare notes
that she should give me a call.

My PCP took x-rays and found nothing. His exam found nothing; my blood O2 was 100 (they look for 90-100) even though my breathing was rapid and shallow. Except for the fact that I had a nasty cough, and I felt really fatigued, NOTHING! He wanted to put me in the hospital but he had nothing to hang his hat on.

He admitted me anyway.

I drove home, got my son up early, and had him take me to the hospital before he had to head off to work. My fun started while checking in, right in the room.

I’ve told you here about my name issues. I use my first initial and middle name. It’s on my driver’s license, my social security card, and most of my documents. Has been for decades. But it drives Procrustes wanna-bes NUTS! They want a first name and middle initial. And will do anything to get it.

So, when they gave me an armband that said, “Benjamin B” and asked if that was me, I flipped out. I said, “No, that’s my father.” Actually, my father died in 1961, but that was his name, not mine.

So started what seemed like a half hour discussion/argument that didn’t end when I showed my driver’s license and insurance card. I tried to explain that I had been trying for months to get my records and my name changed in their computers to little avail, as evidenced by the conversation I was having. We finally compromised; I put the armband on until they could get another one, while they made copies of my driver’s license and insurance cards.

They still had a problem with what to call me. We must have talked for 15 minutes on that subject alone. It reminded me of that comedy routine, “You can call me Ray, or you can call me Jay…” Did I want my first name to be “H.” or “H. Benjamin” with no middle initial? I finally explained that I had had the same problem with my insurance company and they finally resolved it by calling me H. B. Since that was whom my insurance company felt they were insuring, and subsequently paying the bills for, the hospital could just use the same name. The insurance company would be less confused by H. B. than by anything else. I think the hospital bought it. My bracelet right now says H B.

I’m just barely in the door, feeling really whipped —I’m up to an FF of 7-8 by now—and having to go through all this!

I got dressed for the hospital, my new-from-Christmas pj bottoms and their gown, climbed into bed, and had the bed explained to me. It had all sorts of bells and whistles.

Did I mention that it was a private room? They felt that private rooms were more conducive to recovery for patients. LOL!

While explaining the bed and all the switches on the bed, they mentioned that the electricians had screwed up. The wiring for the reading lights on the wall behind the bed had been run to the overhead florescent light. So the room light switch and the reading light switch both ran to the overhead light. A light so bright I never used it because I hadn’t brought sun block! I’m sure it works well enough for lighting the room during a Code Blue, but not something you want to turn on in the middle of the night just to go to the bathroom.

As a Quality Manager, I kept a quote by the founder of IBM, Tom Watson, close at hand. “If you want to achieve excellence...as of this second, quit doing less-than-excellent stuff.” I knew at that moment why I’ve been having so many problems. Aurora expects less-than-the-best from their people. When mistakes are made, little effort is taken to change them.

My oncologist, Dr. P had told me that he was head of the Quality Committee when I brought up some issues. His point was that they were more interested in “important” things.

Frédéric Bastiat—another person who didn’t use their first name—was a classic liberal (libertarian) theorist, economist, and member of the French Assembly. He proposed a theory called “The Parable of the Broken Window.” I can explain it like this; have you ever noticed an abandoned building with only one broken window? Probably not. As soon as one window is broken and not fixed, people feel free to break the rest of the windows. Fix the first broken window as soon as it’s broken and you keep the rest of the windows intact. Simple!

Another way to put it is exemplified by that old canard, “Take care of the pennies and the dollars will take care of themselves.” In other words, pay attention to the details and there won’t be any big “important” issues to worry about. Apparently Aurora hadn’t heard about it.

Dr. C showed up asking why I was in the hospital! He wanted to know all about my symptoms. My PCP had asked when was the last time I had seen an oncologist and I had told him it was Monday, two days ago. He asked if I had mentioned the cough and I said "Yes, indeedy!"

So, the hospital did a CT Pulmonary Angiogram (CTPA) on me and found that I had ANOTHER blood clot, a pulmonary embolism (PE), in an artery to my lungs! The VLCC had missed a clot. But, they already had me on the proper course of treatment for blood clots, but the cough still had my PCP concerned.

The only symptoms I exhibited for the first blood clot found were the swellings in the area of my port. The only classic symptoms I exhibited for a PE was rapid breathing and a cough. Obviously, those can come from a variety of sources. I've had the rapid shallow breathing during almost every chemotherapy treatment. It was what was causing that cough that still had them concerned.

That was pretty much my first day, unless I remember something later. My first night, though, was something to remember.

They take down a list of meds and OTC supplements that you use when you fist get to the hospital. I usually keep a list in my HP iPAQ, which has amused quite a few nurses and gets me remembered the next time I go in. They wish everyone was as organized as I!

So, they knew I took a sleeping pill before bed. I’ve blogged about it here as well.

WELL! They made NO provisions for me to get sleeping meds of any kind. If I need sleeping pills, due to my chemotherapy-induced insomnia, in the serenity and familiarity of my own home, how much more might I need them in a strange and unfamiliar NOISY hospital?

Attention to detail? I think not.

I’m going to leave you here tonight and get ready for bed. I’ll pick up this tale tomorrow.

Do I still have to remind you "As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Home Again, Home Again...

...jiggety jig!

I'm glad to be home although I'll miss some of the nurses. Most of the nurses! There were some very personable nurses taking care of me, so there was some humor and fun going on. I hope that it wasn't ALL professionalism, but oh well.

I'm not feeling very well even after being in the hospital. I feel more tired today than when I had been up for 39 hours. I couldn't sleep the first night at all.

So I'm going to cut this short for now and try to take a nap. I'll come back later to fill in the details.

My thanks to Amy for jumping in to the breach to keep everyone informed. My thanks to Ben for doing the same and for getting me to and from the hospital while trying to maintain his second shift work schedule. Thanks guys!

A quick note, while talking with Pastoral Care, she observed from my screen saver photo montage and from my conversation about them that "You really love your kids." It kinda slowed the conversation down until I could get my voice back, but I wholeheartedly agreed.

I'm gonna take a nap now!

Thursday, January 10, 2008

Dad's hospital stay, day 2.

I stopped by the hospital earlier today. Despite the fact that Dad had been up for nearly thirty hours, he seemed to be in a better mood than he's been in the past several days. His treatment during the stay, it seems, will consist solely of blood thinners and anti-biotics.

I'm not really clear on why he's getting the clots in the first place, but he said that the doctors told him the tumor might be causing them to form somehow. Because of that, he may need to be on blood thinners permanently.

-Ben

Wednesday, January 9, 2008

Don't Freak Out, but Dad's in the Hospital

Hi all,

I'm writing this to update everyone... Dad was not feeling well at all today, so instead of beginning radiation, they admitted him into the hospital. After running a barrage of tests, they have discovered he has multiple Pulmonary Embolisms (Emboli?) [PE]. These are blood clots in the arteries of the lungs. You can Google the term to find out more. While embolisms are bad, they are obviously the worst without treatment, and he is getting treatment. He said he does not think he is in any danger and should be O.K. He also stated that the mortality rate for UN-treated PE is 26%.

He doesn't know how long they are gonna keep him, but he says it sounds like several days. He's at Aurora Baycare Medical Center, 920-288-8000, room #152. There is wireless internet there, but he said he won't be blogging for a while, so I wanted to update everyone.

I'll keep you posted as best I can,

Amy

Tuesday, January 8, 2008

I’d Like To Teach The World To Sing...

...in perfect harmony, but I’m too sick to do so.

After having visited the VLCC last Wednesday with a blood clot and Monday for follow up blood tests, you would think that all those doctors, nurses, and nurse practitioners would have noticed that I was sick with a nasty cold. Let’s see, chemically-compromised immune system, one in ten chance of surviving the next five years, you would think that someone would pay attention to the customer, I mean patient.

I hardly got any sleep last night I was coughing so badly. My stomach muscles and the muscles behind my eyeballs hurt this AM from coughing so hard.

So I called a nurse hotline sponsored by my insurance company and talked to Nurse Sheila. Overall, it went well. Found out that she was pretty sympathetic, even after explaining my medical affiliations. You know, Complimentary & Alternative Medicine.

She gave me some non-medical things to do to help my condition, including postponing my Radiation Therapy tomorrow, and Chemotherapy on Friday until my fatigue lessens considerably.

Called the Clinic and the best I could do is get them to think about it. If I go through with therapy, you have my permission to shoot me, or commit me. I have to be at the clinic by 8:00 for lab tests and my GP by 8:30, then back to the Clinic before 1:00 Radiation Therapy.

Amy, your “experienced” oncologist, Dr. C, had to ask me why I was wearing a facemask, yesterday. Then he wanted to know how my blood clot was. WTF? Since they saw it on ultrasound with nothing more than the swelling to alert me that something was going on, HTF should I know?

From my use of those initials, you have to surmise that I’m pretty pissed and discussed changing doctors with my insurance company nurse. I mean five oncologists/ NPs in five courses of chemotherapy?

Later in the day, my temp went to 101.3, so I called the clinic back. I finally got them talked into using up the other three Levaquin. I took one today and fired up the humidifier. I think my congestion is breaking up somewhat. Temp’s up to 101.4 but I’m chilled in a humidified room that’s 70 degrees.

And I haven’t even eaten anything today. No wonder the nurse suggested I call my insurance company to see what kind of outside help I can get.

I talked Dr. C into allowing me to use my Omega 3 Fish Oil. By the time I get done, I’ll be back on all my CAM supplements. :-)

I’m going to end this here. I need to take something in my stomach and a hot bath. And, if you get a call from me, I may need help getting out of the tub. And I may need Ben to drive me in in the morning. I hate to wait until the last minute to find out.

How Government Solved the Health Care Crisis

You won't see me do this very often, post someone else's work. Normally I'd post some quotes and a link, but this was kinda hard to find in my condition. So I posted it here.

How Government Solved the Health Care Crisis
Medical Insurance that Worked — Until Government "Fixed" It
by Roderick T. Long

Today, we are constantly being told, the United States faces a health care crisis. Medical costs are too high, and health insurance is out of reach of the poor. The cause of this crisis is never made very clear, but the cure is obvious to nearly everybody: government must step in to solve the problem.

Eighty years ago, Americans were also told that their nation was facing a health care crisis. Then, however, the complaint was that medical costs were too low, and that health insurance was too accessible. But in that era, too, government stepped forward to solve the problem. And boy, did it solve it!

In the late 19th and early 20th centuries, one of the primary sources of health care and health insurance for the working poor in Britain, Australia, and the United States was the fraternal society. Fraternal societies (called "friendly societies" in Britain and Australia) were voluntary mutual-aid associations. Their descendants survive among us today in the form of the Shriners, Elks, Masons, and similar organizations, but these no longer play the central role in American life they formerly did. As recently as 1920, over one-quarter of all adult Americans were members of fraternal societies. (The figure was still higher in Britain and Australia.) Fraternal societies were particularly popular among blacks and immigrants. (Indeed, Teddy Roosevelt's famous attack on "hyphenated Americans" was motivated in part by hostility to the immigrants' fraternal societies; he and other Progressives sought to "Americanize" immigrants by making them dependent for support on the democratic state, rather than on their own independent ethnic communities.)

The principle behind the fraternal societies was simple. A group of working-class people would form an association (or join a local branch, or "lodge," of an existing association) and pay monthly fees into the association's treasury; individual members would then be able to draw on the pooled resources in time of need. The fraternal societies thus operated as a form of self-help insurance company.

Turn-of-the-century America offered a dizzying array of fraternal societies to choose from. Some catered to a particular ethnic or religious group; others did not. Many offered entertainment and social life to their members, or engaged in community service. Some "fraternal" societies were run entirely by and for women. The kinds of services from which members could choose often varied as well, though the most commonly offered were life insurance, disability insurance, and "lodge practice."

"Lodge practice" refers to an arrangement, reminiscent of today's HMOs, whereby a particular society or lodge would contract with a doctor to provide medical care to its members. The doctor received a regular salary on a retainer basis, rather than charging per item; members would pay a yearly fee and then call on the doctor's services as needed. If medical services were found unsatisfactory, the doctor would be penalized, and the contract might not be renewed. Lodge members reportedly enjoyed the degree of customer control this system afforded them. And the tendency to overuse the physician's services was kept in check by the fraternal society's own "self-policing"; lodge members who wanted to avoid future increases in premiums were motivated to make sure that their fellow members were not abusing the system.

Most remarkable was the low cost at which these medical services were provided. At the turn of the century, the average cost of "lodge practice" to an individual member was between one and two dollars a year. A day's wage would pay for a year's worth of medical care. By contrast, the average cost of medical service on the regular market was between one and two dollars per visit. Yet licensed physicians, particularly those who did not come from "big name" medical schools, competed vigorously for lodge contracts, perhaps because of the security they offered; and this competition continued to keep costs low.

The response of the medical establishment, both in America and in Britain, was one of outrage; the institution of lodge practice was denounced in harsh language and apocalyptic tones. Such low fees, many doctors charged, were bankrupting the medical profession. Moreover, many saw it as a blow to the dignity of the profession that trained physicians should be eagerly bidding for the chance to serve as the hirelings of lower-class tradesmen. It was particularly detestable that such uneducated and socially inferior people should be permitted to set fees for the physicians' services, or to sit in judgment on professionals to determine whether their services had been satisfactory. The government, they demanded, must do something.

And so it did. In Britain, the state put an end to the "evil" of lodge practice by bringing health care under political control. Physicians' fees would now be determined by panels of trained professionals (i.e., the physicians themselves) rather than by ignorant patients. State-financed medical care edged out lodge practice; those who were being forced to pay taxes for "free" health care whether they wanted it or not had little incentive to pay extra for health care through the fraternal societies, rather than using the government care they had already paid for.

In America, it took longer for the nation's health care system to be socialized, so the medical establishment had to achieve its ends more indirectly; but the essential result was the same. Medical societies like the AMA imposed sanctions on doctors who dared to sign lodge practice contracts. This might have been less effective if such medical societies had not had access to government power; but in fact, thanks to governmental grants of privilege, they controlled the medical licensure procedure, thus ensuring that those in their disfavor would be denied the right to practice medicine.

Such licensure laws also offered the medical establishment a less overt way of combating lodge practice. It was during this period that the AMA made the requirements for medical licensure far more strict than they had previously been. Their reason, they claimed, was to raise the quality of medical care. But the result was that the number of physicians fell, competition dwindled, and medical fees rose; the vast pool of physicians bidding for lodge practice contracts had been abolished. As with any market good, artifical restrictions on supply created higher prices — a particular hardship for the working-class members of fraternal societies.
The final death blow to lodge practice was struck by the fraternal societies themselves. The National Fraternal Congress — attempting, like the AMA, to reap the benefits of cartelization — lobbied for laws decreeing a legal minimum on the rates fraternal societies could charge.

Unfortunately for the lobbyists, the lobbying effort was successful; the unintended consequence was that the minimum rates laws made the services of fraternal societies no longer competitive. Thus the National Fraternal Congress' lobbying efforts, rather than creating a formidable mutual-aid cartel, simply destroyed the fraternal societies' market niche — and with it the opportunity for low-cost health care for the working poor.

Why do we have a crisis in health care costs today? Because government "solved" the last one.

Bibliogaphy

David T. Beito. "The 'Lodge Practice Evil' Reconsidered: Medical Care Through Fraternal Societies, 1900-1930." (unpublished)

David T. Beito. "Mutual Aid for Social Welfare: The Case of American Fraternal Societies." Critical Review, Vol. 4, no. 4 (Fall 1990).

David Green. Reinventing Civil Society: The Rediscovery of Welfare Without Politics. Institute of Economic Affairs, London, 1993.

David Green. Working Class Patients and the Medical Establishment: Self-Help in Britain from the Mid-Nineteenth Century to 1948. St. Martin's Press, New York, 1985.

David Green & Lawrence Cromwell. Mutual Aid or Welfare State: Australia's Friendly Societies. Allen & Unwin, Sydney, 1984.

P. Gosden. The Friendly Societies in England, 1815-1875. Manchester University Press, Manchester, 1961.

P. Gosden. Self-Help: Voluntary Associations in the 19th Century. Batsford Press, London, 1973.
Albert Loan. "Institutional Bases of the Spontaneous Order: Surety and Assurance." Humane Studies Review, Vol. 7, no. 1, 1991/92.

Leslie Siddeley. "The Rise and Fall of Fraternal Insurance Organizations." Humane Studies Review, Vol. 7, no. 2, 1992.

S. David Young. The Rule of Experts: Occupational Licensing in America. Cato Institute, Washington, 1987.

This article was published in the Winter 1993-94 issue of Formulations formerly a publication of the Free Nation Foundation, now published by the Libertarian Nation Foundation


And you wonder why Bob LeFevre said, "Government is a disease masquerading as its own cure."

Sunday, January 6, 2008

I Know, I Know...

I should post something, but I feel like crap. Don't wanna play with anyone right now. I've been coughing a lot and running a fever, at least for me. At one point I was up to 100.5 but usually I'm around 99. I realize that for you folks that may be normal, but for me, I usually run about two degrees lower than you folks. And they say it's not my thyroid!

Ben raised a concern over my digital thermometer, so I dug out my old-fashioned mercury-filled glass thermometer. They were within 2-3 tenths of a degree. Ain't the thermometer!

I'll be going in tomorrow to consult about my clot. Maybe I can stop giving myself injections with bent needle tips; hurt going in, hurt worse coming out! There was only one like that, but how many do you need to make you needle shy?

It seems that Oscar and I are "Brothers of the Lovenox." That's what he was getting in the hospital only his wife, Deanna, gave him his shots after he got home. He said that Dee gave a better shot than the nurses!!

I've found out about a bunch of stuff that absolutely frosts my cookies, like I might have to be on a proton-pump-inhibitor permanently because they have kept me on a double dose of Protonix for way too long! And here I was worried about liver damage.

Radiation starts Wednesday and another round of Chemo starts Friday. Don't know yet what poisons they'll put in me then. Hopefully, I'll get what little hair I have back.

Saw a friend from The Sweatshop in the store yesterday; he didn't recognize me! But we did get a chance to talk a little which was nice.

OK, that's it for now, I'm gonna vegg out and watch a movie so I won't fall asleep too early. I've found that I can do almost everything from my bed except cook my meals. I brought the computer in and can surf the net or watch HD movies on my laptop. I could bring up my cooler/refrigerator from my OTR days and keep food right here. With all the camp stoves I must have, surely I could cook here in my bedroom, right?

Maybe later. Right now you have to remember that "As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Anybody actually go out and check out the link, or am I just blowing smoke up your skirt? Enquiring minds want to know. :-D