ADDENDA

What it feels like
by Lori Tate
(Ms. Tate is a social worker with Renal Care Group in Brookhaven, McComb
and Mendenhall, Mississippi.)
It all began Thursday, May 13, 1999. I was relaxing in one of the empty
dialysis chairs, talking to patients who were getting off dialysis. I
thought to myself "this isn't so bad; why do they complain so much?"
Immediately my brain took over, my next thought was "What if I couldn't get
up?"
What happened next is hard to tell, it all came into being so fast. I
made a decision that would change my life. I decided I would come to the
unit on my day off and pretend to be a patient. The nurses, of course, were
excited about the idea and all joined in making the experience as real as
possible.
First I would weigh with 4 bags of saline (comparable to a weight gain
of 4 kilos). Secondly, I would sit in the dialysis chair and the saline bags
would be placed on me. The bags would be placed on each leg and two in the
chest area. Finally, one bag would be removed each hour. Yes, I agreed to
sit in the dialysis chair for 4 hours on my day off!
It all seemed like such a good idea for a social worker. I would gain so
much empathy for the patients! I was excited! I was feeling great about
myself. I'll be honest and admit the words "Super Social Worker" did come to
my mind.
i However, less than an hour later, I began to think of all the things I
needed to do during the weekend. How could I get it all done and still have
time for my pretend dialysis? This is when I began planning my escape. How
can I get out of this? How am I going to be still that long? It's not like
it's the real thing anyway.
No! I've made a commitment. I've opened my big. fat mouth and now I have
got to do it!
Friday, May 14th, 1999. I spoke with the charge nurse and he explained I
would need to arrive at the clinic promptly at 11:30. Later in the day, I
requested a morning chair. I could get so much more accomplished if only I
could get an early chair. However, the charge nurse informed me there were
no early seats available. Can you imagine? A fellow employee, we work
together! I've helped him out thousands of times. Everyone knows they
(nursing staff) simply use the social workers to do all the things they
would rather not do. Enough whining, the nurse said 11:30. I will be here at
11:30.
The big day arrived. At 11:30, I was awaiting my turn on "the machine."
Of course, I was not seated until 12:00 and not completely "hooked up" until
12:10. With saline bags in place, books to read and other patients to talk
to I was ready to begin. The only problem was, I had only been in the chair
for fifteen minutes and I was ready to get up. Other things that came to my
mind while on the chair were: "This fluid/saline bags feel so heavy," "I am
so cold sitting in this chair," "It doesn't feel this cold when I am
working," "Is my butt numb?," "I can't move my legs, they've fallen asleep."
"What machine is beeping?" "I know how to hit the reset button, however, I
cannot help because I cannot move." "I wish I could change arms, I'm tired
of keeping this arm still." My blood pressure was actually low while "on the
machine," I began to wonder, "What does this mean?" "Am I okay?" "Hey nurse,
come here!"
It was also unusual to be sitting that low in the chair. When you are
seated in the dialysis chair, because of the placement of the unit, you are
unable to see anyone who isn't on your side of the room. I knew which nurses
were in the unit, however, I couldn't see them from where I was sitting.
Also, due to the placement of the machines, J couldn't see anyone on my
left. I could only speak with the patient seated directly in front of me, or
the patient directly on my right.
Finally when my four hours were up, I did not want to talk to anyone. I
had been sitting so long, I just wanted to go home. I felt differently about
the experience than I thought I would. I honestly had not been concerned . I
was going to teach patients something by my good example. However, they
taught me a lot. All of my feelings can be multiplied by a million. I was
not stuck by a needle. I did not watch my own blood come out of my body and
go through a little tube. I did not have the fear of having to in that chair
for the rest of my life because my kidneys were no longer functioning. I did
not become sick and vomit in front of twenty people. I was able to think
about what I would have for supper when I got home, instead of sitting and
thinking about all the things I couldn't have.
I did gain a great deal of respect and admiration for the patients . I
did not gain any further empathy, as the one thing I fully understand is
that I will never fully understand or know what it feels like to be a
dialysis patient, unless one day I am one. I can only hope this experience
allows me to be more compassionate and more apt to treat patients with the
human dignity I know everyone deserves. I also hope that some of the staff
members who were working the day I sat in the chair for 4 hours will take
the time to stop and think to themselves, "What does it feel like, from the
chair?"

==================
Dialynews, Santa Rosa
(a patient newsletter no longer published)
Featured Patient: Frank Brown
Smell the popcorn on the afternoon shift and you'll find handsome FRANK
BROWN in his jaunty hat, munching away in his dialysis chair. Frank is 38
years old and a Chicago native. Frank says he used to enjoy camping and
hiking but usually finds these activities too tiring now. He loves music and
is a real sound system expert. Frank says he has "been on dialysis in some
form or on a transplant since age 22." He sometimes feels as though he is
enduring "by the skin of his teeth." Frank has lived and experienced
hemodialysis or CAPD in Chicago, Indiana, Houston, San Francisco, San Diego,
Redding and Seattle. Despite his frustrations, Frank continues to research
new material on dialysis and transplants. He writes, "I expect dialysis to
be obsolete in a few years, with all possible patients getting
bio-engineered kidneys precisely geared to their particular immune
systems." When we questioned him about this wonderful news, he said,
smiling, "Well, maybe a little longer." Don't we all wish and hope along
with Frank. Frank, an omnivorous reader, shares a few favorite quotes with
us. "How is it possible to expect mankind to take advice when they will not
so much as take warning?" -- Jonathan Swift. "To the intelligent man or
woman, life appears infinitely mysterious. But the stupid have an answer for
every question." -- Edward Abbey.

==================
Our Son and Dialysis
by Frank and Frances Brown

As the parents of Frank Brown, who has been languishing with total
kidney failure through his young manhood, we wish to give some reactions to
his sickness. We feel deeply that Frank, a highly-intelligent human being
who, in addition to suffering a great deal, has been losing out on such
benefits as marriage, career, and travel. We are inexpressively pained to
see the rich promise of his life cut short by such a dominating sickness.
But believing from the beginning that with his qualities of mind and
body he could with proper care achieve rehabilitation, we have long held out
hope for his restoration to a better life.

Gratitude
We are grateful to the scientists who have developed the dialysis
procedure that has kept Frank alive, to those doctors and staff who have
administered to him with knowledge and care, to the public and private
funding to finance the possibility of his rehabilitation, and to the
researchers who are breaking new ground in this field.

Disaster Ahead
However, by reason of conditions within and without the clinic we are
being confronted by the thought that Frank may unnecessarily----we repeat,
unnecessarily----be deprived of his chance for rehabilitation and sink
day-by-day into decline and death.

In Clinic
As parents we are distressed that some doctors and staff seem to view
dialysis as a stop-gap on the way to an early death rather than as an
opportunity for rehabilitation.
We are glad that Frank through research has become quite knowledgeable
on his condition, but he is usually denied a hearing on the sickness with
which he lives twenty-four hours a day. One would think that an inquiring
and informed patient would be welcome in a relatively new discipline
seeking to conquer a heretofore fatal disease but Frank has generally found
that this is not to be so.
Post-dialysis time is usually difficult for Frank with long periods of
fitful sleep, lack of appetite, and debilitating weariness. This condition
is aggravated by lack of communication and care and by frequent equipment
breakdowns that eat into his scheduled dialyzing time.

Absentee Landlords
Recently we have become gravely alarmed by decisions being made mainly
by the absentee landlords who own and control the clinic. We refer to the
"reuse" of dialysis equipment. Thus in Frank's case the dialyzer, even while
containing a manufacturer's statement that it is to be used only once, is to
be treated with formaldehyde and then to be "reused" and re-treated again
and again.
Leading internationally-renowned renal physicians, including Dr.
Shandlin, who once supported this practice, are now adamantly against
"reuse" as a grave detriment to the health and life expectancy of the
patients.
For a time Frank did have a short rest from "reuse" but recently as a
condition of gaining access to a new machine in place of a less-effective
one he was pressured into signing a contract accepting "reuse." This was a
cruel ploy to use against a desperately sick person.
More disastrously Frank now faces an additional concern in the move to
"reuse" the bloodline, the plastic connection through which blood flows from
body to machine and back. He has been informed that the bloodline is to be
used 9 times for a total of 36 hours. He worries that such extended usage
might result in something breaking off the plastic and entering the
bloodstream.

Congressional Investigation
A prime problem here is the economic allocation of the dialysis money,
most of it coming from the federal government and much of it being handled
through for-profit corporations and combinations of corporations.
We urge the federal government, which has been generous in meeting the
challenges of kidney failure, to investigate and reform the dialysis
industry before the government's original goal of rehabilitation is
completely reduced to a debased status as a sickness-maintenance operation.
Questions to be asked by the government as well as by the public
include: How is the dialysis money being allocated? What are the costs of
the machines, the dialyzers, the bloodlines, and labor? Why have the sick
been forced to submit to "reuse"? What are the financial rewards of the
for-profit corporations? Do large-scale combinations serve best the
interests of patients or of those who own and control them? What are the
real economic costs of an industry more attuned to assembly-line
sickness-maintenance than to personal rehabilitation? Are there alternative
methods of cost and care? What possibilities exist for expanding home
dialysis? Is personal rehabilitation still the goal of the program? Are
crucial medical decisions in effect being made by business people rather
than by physicians? Have patients as a class become the pariahs of a
dialysis industry?
Recently in a sad moment Frank asked us, "If the government wanted to
rehabilitate us, why doesn't it make more serious efforts to see that such a
goal is pursued, instead of having us linger around sick and weak, while
all sorts of people are making excellent livings off the government money
set aside for our benefit?" As parents interested in rehabilitation not only
for a son but also for his fellow-dialyzers in this land we would like to
have the answers to the questions.
(Frank Brown is a professor of economics at DePaul University; Frances
Brown is a homemaker with a background as a teacher of physics at the
university level.)

==================
Frank Brown
7400 Bridgit Drive #25
Rohnert Park, California 94928

Dear President Clinton:
I am writing to call your attention to the kidney dialysis program
under Medicare and Medicaid. While this may have begun as a noble venture to
save lives and return people to a worthwhile life, it has degenerated into a
vast money making scheme in which people are being given less than adequate
treatment while dialysis corporations and manufacturers take more than
adequate profit. Although there are some excellent doctors and clinics, and
many patients manage to do well on dialysis, there are many clinics of the
"franchise" variety that tend to give the minimal treatment possible, in
effect merely keeping the patients alive, while making as much money at
possible. These places treat patients as so much property, victimizing and
virtually enslaving them in a downward cycle of despair and deterioration.
Here are some changes that need to be made:
First of all, a much higher standard of care should be established, so
that all patients can be sure of receiving adequate treatment. There should
also be a federally directed quality assurance program with feedback from
the patients themselves, as well as the medical staffs.
Second, get as many patients as possible on independent home dialysis.
Home dialysis patients have been found to do the best in almost all
parameters. They are healthier and happier, return to work at a higher rate,
have fewer complications, and live longer than other patients. They do their
own treatment on an independent basis, under their own control, and at their
own convenience. It is no wonder that they are the best rehabilitated of
all dialysis patients. Unfortunately, at present, the majority of patients
do not have this freedom and opportunity.
Another thing that would help would be tax credits for new equipment
purchases. Many of the clinics are treating patients with ancient machinery
(long since depreciated). The newer machines give a much more comfortable
and accurate treatment.
I hope you will look into this and make some changes. A lot of people
are trapped in a detrimental situation and need a better chance if they are
to have worthwhile lives and contribute to society. I personally have been
on dialysis for 16 years, and have been appalled at the abuses I have
witnessed and heard about. I am certain that a much better situation could
prevail, but it won't happen unless it's federally mandated.
Thanks, and good luck with everything.

Sincerely,
Frank Brown
Rohnert Park

TO: FRANK BROWN, ROHNERT PARK
Thank you for writing with your thoughts and concerns. I apologize for
the delay in responding, but the volume of mail I've received has been
overwhelming. I am honored by the outpouring of support and interest in my
programs and challenged by the many pieces of constructive criticism
received. While I haven't been able to respond to every issue raised, your
ideas and opinions mean a great deal to me. I welcome the opportunity to
hear from you again.
-- Bill Clinton

Thank you very much for writing about health care reform. The Health
Security Act will guarantee every American a comprehensive package of
benefits that can never be taken away. Your support is invaluable to the
President as his Administration works toward meaningful and lasting change
in our health care system.
-- Hillary Rodham Clinton

Contacts:
€ American Coalition of Kidney Patients
P.O. Box 963 La Puente, CA 91747
Phone: 626-917-9803
E-mail: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

€ American Associationf Kidney Patients
111 South Parker Street, Suite 405, Tampa, FL 33606
813/251-0725/800-749-2257. Fax: 813/254-3270.

€ National Kidney Patients Assocation
804 Second Street Pike, Southamptom, PA 18966
215/953-8883

€ Dialysis Ethics
Arlene Mullin, hemotologist
11500 NE 76th Street, Box 241
Vancouver, WA 98662
www.dialysisethics.org / This e-mail address is being protected from spambots. You need JavaScript enabled to view it
360/936-8327, 360/721-6477.

€ Department of Health Services
Facilities Licensing Section
50 Old Courthouse Square, Suite 200
Santa Rosa, CA 95404
707/576-2380

€ National Medical Care, Inc.
Dialysis Services Division
Bio-Medical Applications of Santa Rosa
aka Dialysis of Santa Rosa
1739 4th Street, Santa Rosa CA 95404
707/527-5350

€ American Association of Kidney Patients
100 South Ashley Drive, Suite 280 Tampa, FL 33602
Phone: 1-800-749-2257 or (813) 223-7099
Fax: (813) 223-0001
Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Internet: www.aakp.org

€ American Kidney Fund
6110 Executive Boulevard, Suite 1010
Rockville, MD 20852
Phone: 1-800-638-8299 or (301)881-3052
Fax:(301)881-0898
Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Internet: www.akfinc.org

€ Life Options Rehabilitation Program
603 Science Drive, Madison,WI 53711-1074
Phone:1-800-468-7777 or (608)232-2333
Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Internet: www.lifeoptions.org

€ National Kidney Foundation, Inc.
30 East 33rd Street New York, NY 10016
Phone:1-800-622-9010 or (212) 889-2210
Fax:(212) 689-9261
Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Internet: www.kidney.org

€ US Department of Health and Human Services
Health Care Financing Administration
7500 Security Boulevard
Baltimore, MD 21244-1850
Phone: 1-800-MEDICARE
(1-800-633-4227)
Internet :www.medicare.gov