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Part 3 - Frank Brown

 

The Big Business Of Blood Washing

 

Life With Dr. Carl at Second Street and Brookwood, Santa Rosa

 

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by Bruce Anderson


Fresenius Medical Care North America makes its headquarters in
Lexington, Massachusetts. FMC was created when W.R. Grace and Company based
in the United States, and Fresenius, the German manufacturer of dialysis
machines, combined. Grace and Company had sold dialysis machines and related
products in the United States for many years, working closely with the
Germany-based Fresenius. FMC is now the largest dialysis company in the
world.
In May of this year, FMC paid $1,658,923 in federally-imposed fines for
defrauding Medicare and other government programs by billing the government
for a drug called "Epogen which FMC received free from its manufacturer.
FMC is a franchise operation. It sets up and runs clinics throughout
the United States. Dr. Carl Wilson operates FMC's Santa Rosa dialysis
clinic. Each patient returns some $100,000 a year to FMC in Medicare,
MediCal and private insurance payments. FMC provides the dialysis machines
and all their accouterments. These machines do the work of failed kidneys by
extracting toxins from the patient's blood and waste fluid from the
patient's body. They are complicated, sensitive devices that should be
operated only by highly trained, skilled technicians. Sometimes the dialysis
techs know what they are doing, sometimes they don't. There are no mandated
training standards.
Because dialysis in America is a for-profit business, there is every
incentive for its operators to squeeze patient care for ever-greater
profits. In a macabre upending of medical ethics, it is also in the
financial interests of the dialysis business owners to keep their patients
unwell and medically dependent on centralized dialysis, hence the prevalent
callousness of care. America's death rate among dialysis patients is, by
far, the greatest of any country in the industrial world.
Helping organizations like the National Kidney Foundation are dominated
by the industry. FMC's board of directors is close to the Bush government
and the Republican Party's upper echelon. Well-placed Republicans move in
and out of policy-level government positions crucial to the regulation of
the dialysis industry they came from and will return to. These persons run
interference at the regulatory level for their paymasters in the private
dialysis industry.
The General Accounting Office concedes that inspections of dialysis
facilities are few and far between. In 1999, for example, only 11 percent of
the approximately 3,800 clinics and hospital units devoted to dialysis were
inspected.
Complicating the scandalous dependence of kidney patients on
unscrupulous dialysis profiteers, the Balanced Budget Act requires annual
reductions in "provider reimbursements" by Medicare, meaning that
providers, to maintain the level of profit to which they've become
accustomed, must squeeze more out of patient care to make up the difference
between desired profit levels and federal reimbursements.
Some 300,000 people depend on dialysis for their lives. These 300,000
represent only 1 percent of Medicare's 39 million beneficiaries, but their
private treatment represents 5.2 percent, or $12.8 billion of Medicare's
*annual* spending.
Victoria "Vicky" Larsen is a patient at the FMC Dialysis franchise
located in downtown Santa Rosa. Like the redoubtable Frank Brown, Vicky
Larsen is very smart and very brave. She speaks right up and laughs often at
a life replete with medical catastrophes.
Born in Oregon where she lived for 12 years before her family moved to
Chico, Vicky attended junior high, high school and college in her adopted
town. After college Vicky left home for San Francisco where she worked for
the Bank of America. From there she moved to Santa Cruz and marriage.
"I moved up here to Santa Rosa in 1983. My father and mother lived here.
My father had had a serious stroke. I came up to take care of him. I had no
intention of staying. I had been living in the Santa Cruz Mountains. I liked
it there. Santa Rosa is just not my kind of town. It's a very nice town if
you have a family and if you're fairly conservative. I had been married, but
hadn't been married for a long time. I was unable to have children,
unfortunately, but I was able to get pregnant very easily. I used to tell
guys, 'Don't look at me for very long because I'll get pregnant (laughs). I
just couldn't carry to term. I was pregnant five times, and I wanted kids so
badly. My gynecologist was a man, and it was just kind of an automatic then
that if there was something wrong with your female organs, 'Oh let's just
take them all out!' He made the decision, as I found out afterward, that
because I was 39, and I wasn't married, and it didn't look like I'd have
kids, he just went ahead and did the operation. I fully intended to have
kids! I just hadn't found the right man."
A series of medical catastrophes, including hip replacement surgery made
necessary by an earlier misdiagnosis unrelated to kidney disease, has
nearly crippled Vicky, but she struggles on.
"I try to function like a normal person even though I need help from my
cousin, who is my in-home caregiver, and I get help from a very good girl
friend. I live with my mom who has been diagnosed as having Alzheimer's. My
cousin and my girl friend do most of my shopping for me. I can't carry
anything because my hip isn't strong enough. After my last surgery I was
just starting to walk with a cane. A friend was going to take me out to
dinner on my birthday, which is on December 30th. I'd had my last surgery
the end of October, and this was the first night I was walking with a cane.
Just as I was going out the door I fell and broke my femur just above the
knee. (Laughs) It was a comedy of errors for a while. I'm 55, and that's as
old as I'm going to get -- don't tell anybody. If you talk to anyone after
December! I will be 55, or maybe 50. Or maybe 39. I never grew up.
I suspected that I had something wrong with my kidneys from about the
age of ten. I retained tremendous amounts of fluid. I don't know how many
doctors I went to. I went to specialists in every field. I was diagnosed
with all kinds of things but mostly I was told to see a psychiatrist, as if
I was imagining gaining 20 pounds because of fluid build-up. It took me
years to finally figure out what was going on. I have a kind of kidney
disease that's very insidious. Even though I was retaining a lot of fluid
the doctors either ignored what was happening to me or told me it wasn't
serious. Finally, after taking this medicine and that medicine, one doctor
finally figured out that I have kidney disease."
Vicky Larsen began dialysis in July of 1998. She and Frank Brown are
good friends, veterans of the ongoing combat at FMC Dialysis of Santa Rosa
between caregivers and the cared for.
Dr. Wilson, his patients recall, took on a new associate a couple of
years ago, "a beautiful young woman" named Dr. Jill Edison. When she joined
FMC Dialysis of Santa Rosa, Dr. Edison was married to someone else with whom
she had a child. But soon after she arrived at the clinic she married Dr.
Wilson.
"She is a wonderful lady," Vicki Nelson says, before speculating that
Dr. Wilson must have qualities not on display in his professional life.
"Love can be blind, but you would have to be really blind, I tell you, to
marry him! When Dr. Edison started out she was genuinely involved with the
patients, and very helpful to me personally. But she's changed to be more
like him, unfortunately."
Dr. Wilson and Mrs. Dr. Jill Edison-Wilson also run the dialysis unit at
Memorial Hospital in Central Santa Rosa, a few blocks from their clinic at
Second Street and Brookwood. The doctors apparently spend most of their time
at Memorial although they're supposed to appear at Wilson FMC franchise
every Monday to see their Monday, Wednesday and Friday patients. These
interviews at which the two FMC doctors seldom appear, take the place of
office visits. But patients say months go by without them seeing either
doctor at Second Street and Brookwood. The on-site authority at the clinic
is usually a registered nurse. A third doctor has now joined the
Wilson-Edison team. Patients describe the two female doctors as Wilson's
"harem."
"Everybody deals with things differently," Vicki Larsen says. "I try to
make the very best of everything of the bad health hand I've been dealt. As
soon as I started dialysis I developed fibromyalgia, which is a connective
tissue disease that causes pain like I have never experienced in my life.
You feel like someone has hit you with a baseball bat. I deal with that
daily. Then, a couple of months later I developed breast cancer. Then I
broke my hip. (Laughs.)
I was out buying a Christmas tree; usually I go out in the woods and cut
down a tree, but this year I didn't have time so I went to a lot to get my
tree. Somebody had swept a pile of what looked like pine cones and needles,
but one of those hard little rubber things they use on fencing was buried in
this little pile. I stepped on it, my ankle rolled and I fell down in the
parking lot on the cement slab. I have had four surgeries on my hip and a
hip replacement. I was flat on my back for two years.
When I started dialysis I decided I was going to make it fun. I went in
and I went around and introduced myself to everybody and started trying to
make it an 'up' experience instead of a 'down' experience. Because dialysis
is something that you have to do three times a week, I make each visit
special. Yes, I suppose you could say I psyche myself up. I treat myself to
special things to eat. I dress up and look like maybe I'm going to a party.
I do it because it makes me feel better.
There is much to complain about the way the treatment is delivered. No
doubt about that. Unfortunately, a lot of the patients are elderly and not
in real good shape; not really with it. They're defenseless! I swear to God
these machines take your brains out of your head along with your blood and
your fluids. I've been an avid reader all my life but within months after
starting dialysis, I could no longer concentrate even on novels.
There are a few people on the staff who I think genuinely care, but for
the most part they are in it for the money. They treat the patients like
shit. As soon as you walk through the door you're their prisoner; that's how
they make you feel. You are to conduct yourself according to *their*
convenience or whatever makes your treatment, your time on the machine,
easy for *them*. It is a tough thing to deal with. I have had a real hard
time with it, frankly, no matter how I prepare myself.
I do try to educate myself as best I can. It's crucial that when you
have a serious physical problem or disease that you participate in your own
care. If you don't they will let you die. I'm sorry to talk this way but
it's true. They really just don't care.
I remember this sweet old man who seemed to be in pretty good shape when
he started dialysis. I would say he was around 70, maybe younger. I watched
this man in two months go from a happy and full of life just gradually
started going downhill. Slowly at first then he started going really fast.
The doctor came in one day and said to him, Well, what do you think? Are you
about ready to throw it in? Hang up the towel? And the old man said to the
doctor, I don't know. What do *you* think?
The doctor was asking the man if he wanted to stop dialyzing and die.
The old man was confused. The doctor said, Why don't we flip a coin? I swear
to God he took out a quarter and flipped the coin! The old man must have
lost because he died two weeks later. I just about died myself when I saw
that coin toss. A doctor relating to a patient like that! The old man still
had years of life left, but just because he was older and not getting the
care that he needed... It's like a cattle call.
I have been at this same place here in Santa Rosa from the beginning of
my dialysis. At first I didn't really know what to expect. I didn't know we
weren't getting very good quality of care. They take shortcuts, but in
kidney disease you can't take shortcuts.
If you have a reasonable amount of money when you start, and you can
afford to pay for your own treatment, you will be broke fast. It costs a
lot. I am one of the cheapest patients to dialyze because I don't require a
lot of other medication, but the medication they give you intravenously for
anemia make your bones just go to hell. And you have to take another
medication that helps build oxygenated red blood cells, which is also very
expensive if you have to buy it yourself.
A big problem is MediCal. Most of the patients are on MediCal. MediCal
will only allow you a minimum of the different medications you need. I
realize that they are expensive, but nevertheless MediCal cuts you off after
a certain amount whether or not you need more in your particular case. And
they tend to cut you off whenever you start to get a little bit stronger. So
everybody on dialysis is anemic all the time *because the clinic does not do
what is necessary to build your blood up*.
After reading everything I could get my hands on, and talking to people
and observing what was going on around me, I knew that I was seeing things
there were absolutely appalling and should not have been happening! To know
that you're only allowed to get only a little bit of something that you need
to make you healthy, well, the clinic, by not giving it to you because it
costs the clinic money means they're not really doing what they're supposed
to do.
I'm very lucky. My blood cleans up easily. But, over time, I've lost my
ability to make urine; the urine that I *do* make is very high quality,
whatever that means. (Laughs.) My potassium, though, has run
life-threateningly low. until I started dialysis. I used to have to be
rushed to emergency because of my low potassium. I don't retain it. Most
dialysis patients have the opposite problem in that they have too much
potassium.
When I first started, Dr. Carl Wilson ran the clinic. He was the only
doctor available to the patients. I have tried to make the best of my
relationship with him, which is very difficult. He is the most arrogant man
I have ever known. He treats other doctors as if they're idiots, and he
treats patients worse than idiots. He doesn't explain anything. He will not
allow you to get an entire sentence out before he butts in. I believe that
everybody knows their own body best; doctors should listen to what their
patients are telling them. But Wilson won't answer your questions and he
talks off the top of his head like he's a psychic or something. He
mis-diagnoses people constantly. He just doesn't care. After a couple of
months of knowing him, I said to him, 'I know you can walk on water but you
don't have to do it for me because I'm *already* impressed. You don't have
to turn water into wine for me either.' He looked like he was going to hit
me.
I constantly tease him. It seems to me like the only way to maybe get
this guy to look at himself. He has to realize that he has people's lives in
his hands. But he's so blasé about it. For example, Dr. Wilson never offered
me the option of dialyzing a different way, which is called peritoneal
dialysis. Instead of having an artificial thing in your arm that you dialyze
through in an assembly line-like set-up at his and FMC's clinic, you dialyze
in your peritoneal cavity and you can do it at home through a machine about
the size of a VCR. He didn't even mention that option to me.
A male nurse runs peritoneal dialysis for all of Sonoma County. He
thought that because I was fairly well-educated about other things that I
already knew about peritoneal dialysis as an option for me. But I *didn't*
know I could do it until this man, the nurse, told me about it. I just
thought it was not a desirable way to go. That would be why the doctor would
not offer it to me, I suppose, because the doctor wants us all to come to
him at the corporation in downtown Santa Rosa.
In reality, peritoneal dialysis is much better because you can dialyze
every day for about eight hours *while you sleep at home*! You don't feel
like you're tethered to the clinic. It's really a drag to have to go to the
clinic every other day. To be able to dialyze at home whenever you want to
is a great option. But I've been having systemic problems, so until I can
get that taken care of, I can't start dialyzing at home. I could have
dialyzed at home when I started, but I didn't know I could.
When you start dialysis at his clinic, Dr. Wilson hands you a little
book that looks like it's written for a child, but he has not ever mentioned
home dialysis to me. Not once. Why? Because FMC Dialysis and Wilson don't
make as much money from home dialysis. Also, Wilson, in my opinion, is a
control freak. He wants to have his finger on everybody's life. He wants to
be in control. He gets these ideas about who people are without ever even
talking to them. He has this idea that I'm a party girl. I used to be a
party girl, but that was a long time ago. No longer.
When I go out to dinner I'll have a margarita, but I don't go *anywhere*
these days except dialysis because I'm so tired and weak all the time on my
days off from dialysis I sleep constantly. It's partly the dialysis and
it's partly the disease, the fibromyalgia, and it's partly that the clinic
is not doing its job correctly. They either don't take enough fluid off or
they take too much off!
My blood pressure runs about 110/59. It's good. But as you dialyze they
take fluid off and your blood pressure goes lower. *They drive your blood
pressure down too far*. I practically crawl out of there on my hands and
knees because I'm so weak when I leave. They're not supposed to let you
leave the clinic unless your blood pressure is normal. But they don't pay
attention to the *diastolic* number. When I'm through dialyzing many, many
times I have to stay in maybe an hour, drinking chicken broth to try and get
my blood pressure up and to get food back in my body. It's crazy!
There are about a hundred patients at FMC here in Santa Rosa. The people
who work there make pretty good money. They start somewhere around $14 an
hour, but they get on the job training, basically. Only recently they
started to require that people who do not have experience in the medical
field to take classes in basic procedures rather than learning the job as
they go. That makes me happy because some of these people don't know shit
from shinola about the medical profession. And if they make a mistake they
can kill somebody! I've never seen anyone die, but I have seen people come
very close to dying right in their chair while they were on the machine.
The room where we sit is freezing! I understand that the staff, racing
from patient to patient, needs a reasonably cool work site, but the
patients freeze to death. When your blood constantly goes out of your body
you grow colder and colder. Unless they keep the temperature turned up on
the machine as your blood flows through it and gets re-heated, you just
freeze to death. I take a heavy blanket and dress as warmly as I can even
when it is hot outside. Even in the winter they keep the air conditioner on
low, so almost everybody comes in with a blanket or sleeping bag.
You should see Frank Brown when he's at the clinic! It's hilarious. He
looks like he just came in from the snow country, and then he covers himself
with a big plastic tarp on top of his cold weather clothes because he has no
meat on his bones. There are certain spots in the clinic that are colder
than others. *For some reason* they always put Frank in the coldest spot.
He's singled out for unpleasant treatment because he calls them on their
crap, their negligence; and he does not do it in a very nice way. But it
needs to be done! His life is at stake!
Ordinarily, when you're dialyzing they return all of your blood. That's
the last step in the process. Twice in one week they were not paying
attention and didn't return all Frank's blood at the end of his time on the
machine. When you are anemic and weak anyway that's life threatening!
Especially for Frank. He's been on dialysis for so long and has been through
so much and he's suffered needlessly because they don't like him for
speaking up about how things should run.
There are a lot of people who prefer to remain completely detached from
their own care. They don't seem to understand that their health is at stake.
If you don't participate in your own care you are really at their mercy.
I'm not saying that all of the people at the clinic are negligent; I'd say
that at least half of them do a really good job. The head nurse on my shift
really does care. And Frank Brown, for one, *does* get things other people
don't get. If he thinks that a particular lab is not doing the lab work
correctly, or if he thinks that something doesn't make sense, Frank will
demand to have his blood assessed at another lab. That is kind of a big
concession on the clinic's part because it costs them a lot of extra money
to do it. So in some ways the clinic does indulge Frank, but in other ways
they are just downright cruel and do mean things purposefully to him. They
purposely try to make him uncomfortable.
No, I don't understand why they don't allow visitors to come in with
patients. We just sit there watching our blood run out of our bodies into
the machine and back into our bodies again. It's nice to have someone with
you. When I first started we were encouraged to bring friends and family
during our treatment. The clinic used to be very open and friendly that way.
A friend of Frank's would appear from a cave or some place, I'm not sure,
but he was a delightful man and he took a liking to me. (Laughs) It was my
fault *and* his fault that the whole thing changed because he would come and
sit with me and rub my feet and occasionally kiss me on the cheek. I guess
we were having *too good* a time. This man went around and talked to
everybody and some days he would bring his guitar and just quietly play.
Everybody liked him coming in. There were people in the clinic who didn't
have anybody in or out of the clinic -- nobody to talk to, to vent to. But
guitar man was the last of the visitors.

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