RENAL OUTREACH ESRD Network 9/10 Winter 2005/Vol. XV, No.1
only 3 months before I went into End Stage
Renal Disease. Just 4 years prior to thatdiagnosis my husband and I had bought our
news, I felt very honored. This allowed me
teenage and young adult children complete
to attend this year’s national conference for
Polycystic Kidney Disease (PKD), which isgenetic and more common than people
realize. It has also been a part of my life for
recognition. However, the company Iworked for had been sold and during the
multiply in the kidneys until they take over
this newly re-invented “dotcom” was failing.
the healthy tissue, then they continue to doso until the kidneys can reach the size of
decline kept me from seeking another job.
As was expected, a week after starting on
dialysis, my employer informed the staff we
had one day of employment left. It was an
extremely difficult time for our whole family.
illness, an uncertain future, loss of income
and new medical bills affected each of us
purpose for holding the conference in the
profoundly. For the first six weeks I was
Nation’s capital was to be able to meet with
depressed and did little more than focus on
our congressional representatives to make
my illness and concern for family members.
As I adjusted to my new life, the need for
During my free time I was able to see some
conference that I found quite exciting. For
Cathedral, whose outside architecture isvery impressive but the inside is
1) There is now a genetic test to look for the
risk. Before, the test could only search for
went on a tour. While seen during the day,
you can tell how beautiful and grand they
are but when you see them at night, all lit
disease. Once identified, then it was possible
to look for these identical markers in the at-
weekend which I thank The Renal Networkand the Robert Felter Memorial Award for
Now, even if there is only one member in the
family with the disease, the test can identifythe actual gene that is affected and then test
to see if the at-risk member has that sameexact gene.
A Note on the Robert FelterMemorial Award
This test can benefit my family because I amthe only member in the family who has PKD. The only drawback is that the test is quite
expensive and most insurance policies aren’t
Leadership Committee, Medical ReviewBoard or Board of Trustees), can apply for
the Robert Felter Memorial Award which is
University Hospital that holds a lot of promise.
accepted at the beginning of each year.
It will help patients who produce too many
Robert Felter was a long-term patient who
antibodies against foreign tissue to still be
advocated for patient education throughout
3) There is a study that will soon begin that
will test a medicine that may slow down cyst
production in patients who haven’t lost the
use of their kidney function yet. This study is
Support Network’s National PatientMeeting (Chicago, IL)
I felt strongly that I had to help pay my
medical costs and wanted to continue to help
two trips with other employees as I lugged
my peritoneal dialysis machine throughairports and set up my nightly regimen.
I applied for unemployment compensationand began the work of finding a job. The right
job for me had to be close to home to allow
time of my transplant surgery and healing
me time to rest and time for dialysis. One job
for which I interviewed, not only fit the criteria
get time off for post-transplant clinic visits
but was in an area for which I had achieved
out-of-town I’ve worked 10 hour days for 4
recognition and had references from some of
Our lifestyle has been simplified; no longer
I had always done well in interviews and was
is it important to have “executive clothing”
used to receiving positive feedback.
or a meal in a fancy restaurant. The trade-
off is that I have more time at home and am
potential employer that I was on dialysis and
profession and am enjoying educationtowards certification in my new field.
Immediately after giving that information, Iknew they did not want me. In fact, I felt they
could not wait to get me out of the office.
I would like to share that I bounced back afterthat interview, but I was feeling down and didnot take any action for a few weeks. The
medical bills kept coming. I felt insecureabout approaching potential employers.
Because I knew of an employment agency in
Dear Marci is a service of Medicare Rights
the area that took a personal interest in
others, I made an appointment with them. In
independent source for providing Medicare
addition to taking the usual information for a
information and questions and answers.
job search, they recommended I speak withone of their temporary personnel people,
newsletter for patients. To sign up, e-mailDearMarci@medicarerights.org with the
Carole’s good friend was on a transplant list;
words “subscribe consumer” in the subject
illness. Carole arranged for a temporary jobat a local hospital under the supervision of a
There is a new topic each month and there
are links to other sites relating to the weeklytopic if more information is desired. If you
have a question for Marci, simply click on
the appropriate link or e-mail your question.
valuable worker. The hospital hired me after
and catheters. I really liked the button-holefor myself personally.
“Big Boys” from Centers for Medicare/Medicaid (CMS) which is the Federal
From September 30th to October 3, 2004, I
Support Network Inaugural National Patient
in quality health care services for patients
Meeting that was held in Denver, Colorado.
such as the AV fistula initiatives that are
This meeting was the first of its kind.
The Renal Support Network president, Lori
Hartwell, outdid herself. This meeting was
geared for patients and administration. The
meeting consisted of 45-minute sessions.
who used to dialyze on the first machine.
Everything ran smoothly, was straight to the
point and was very informal. If you asked
questions, you were given very supportive
it on dialysis using the first machines.
empower patients for health, happinessand hope.
I attended lots of meetings, each wasunique and interesting. I learned quite a bit
from each session. But the thing I enjoyed
special. When I checked in at the hotel, I
around the world and listening to them talk
felt like I was a star. The hotel staff and
about dialysis and how they are taking care
setting was very unique. At the registration
table, Ms. Hartwell seemed as if she knew
educated about their bodies, medications,
centers and health solutions. There are lots
of materials out there and plenty of places
and notebooks to aid with notes for every
that will help you learn to live successfully
I also had an opportunity to see Denver, but
it was rainy so I did not go out much. We
Wilson presenting the “Seven Secrets to
had a lovely dinner that was delicious.
Success” for dialysis patients. The next
They also held raffles after each session
various organizations. We had lunches with
the experts which allowed for personal time
such as fistula, grafts, button-holes, ports,
and catheter, as well as peritoneal dialysisand transplants.
We also had a casino night that was great,but I lost all of my play money.
It was great to see other people who livewith other types of access besides fistulas
I wish that more patients would pay attention
to articles, newsletters, and everythingavailable to them at their dialysis centers andin particular take advantage of the educational
materials that are out there for us.
longer working and that you have chronicrenal failure, a number of decisions have
I’d also like to thank Diane Wish and the CDC
Staff for making it possible for me to attendthis great meeting and letting me represent
treatment that is best for you. This choiceis not necessarily forever. You may later
Listed below are some excellent educational
choose the choice of transplant or if you
are receiving incenter dialysis you maylater choose to do home dialysis or vice
It is important to talk to your doctor about
! Dialysis Patient’s Health Guidewww.nephron.com/dialysishg.html
Although most people go to a dialysiscenter for treatment for kidney failure,
! American Association of Kidney Patients
home dialysis include living longer, having
a better quality of life, more convenience
be a good fit for your lifestyle andneeds—either right now, or in the future.
! Life Options Rehabilitation Program(800-468-7777) www.lifeoptions.org
breakthroughs, it’s easier than ever to get
I now have a problem and since George issuch a special friend, I really don’t knowhow to break the news to him. I must tell
George our relationship, may have to endsoon.
I would like to tell you a story about my friend,11712. He is someone very special to me and
If things keep going the way they are, then
has been my best friend and live in partner.
A few years ago, I was introduced to 11712
and he is really a big part of my life now.
would make him happy and that he couldmake happy too.
To some people they would think of him as alittle strange in his looks and dress. I would
George was born with a silver shield on his
really like to explain why. But before I go any
further, I would like to tell you 11712 now has
you haven’t figured out who George is, he
a name, it is George. I just couldn’t go
well and the tests are good, I will soonhave a kidney transplant and I won’t need
Anyway, George’s body is odd shaped, and
he wears the same shirt of gray and cream
companion. That’s George’s job at night,
day and night. On the front of his shirt are
three round buttons, one of green, one of red
creaking, squeaking and purring softly.
and one of blue. There are also two trianglesof blue with white triangles in the middle.
These triangles point, one up and one down. I suppose George is trying to start a new trendin men’s clothing.
Anyway, we have about an hour at nightbefore George goes to work and about thesame in the mornings before George goes to
Resources for children with kidney disease
bed. You see, George works nights and that
is about all the time we can see each other. The Inside Story, A Kid’s Guide to
One evening I asked George what he did at
Kidney and LiverTransplantsby Karen
work. He explained he made soft sounds on
his job. So, I asked George to show me, he
Healthcare, Inc., it is available free from
began to puff softly, creak and squeak. He
www.fujisawa.com or by calling (800) 727-
also has a pocket, which holds a cassette, this
plays without music, I really was amazed. George has this amazing way to keep time. Kids Kare, an internet site developed by
George told me his face glows green while
transplantation. It includes a coloring book,scrap book, recipes, net pals, and other
George has really been very helpful to me
“cool” links at www.kidskare.org.
these past few years, and has given me much
the Renagel REACH Program toll-free at(800) 847-0069 for more information.
New Dialysis Patients(News Release Dated: October 29, 2004)
Genzyme also supports the Renagel Patient Assistance Program (RPAP) which helps
qualified dialysis patients obtain a free, six-
month supply of Renagel product each year.
hydrochloride) in patients who are new to
hemodialysis. The data, drawn from therecently completed Renagel in New Dialysis
For application materials or more information
Fund’s RPAP Department at (800) 638-8299,
ext. 1773 or visit www.kidneyfund.org. To
learn more about Renagel ask yourhealthcare staff or visit www.renagel.com.
Investigators reported during a symposium
at the American Society of Nephrologymeeting in St. Louis that the RIND study
data show a significant difference in the
Different binders bind different amounts of
amount of coronary artery calcification over
18 months -between patients using calcium-
calcification scores were significantly greater
in the calcium-based phosphate bindergroup than in the Renagel group.
If you are taking a calcium-based binder youcan substitute over the counter Tums until
you get your prescription filled. This is not
using both types of phosphate binders were
able to achieve target levels for phosphorus
Renagel because of the risk of developing
and calcium-phosphorus product as outlined
high calcium levels. Always check with your
in the National Kidney Foundation’s Kidney
making any substitutions on your binders.
Aside from taking binders, phosphorus can
Genzyme, through the Renagel REACH
be controlled by watching what you eat. Program, is partnering with many of the
AAKP’s “Na-K-Phos Counter” is a 14-page
offer Renagel at a reduced rate. Patients
amounts of sodium (Na), potassium (K) and
must sign up for a participating Medicare-
phosphorus (Phos) in the standard sizes of
approved Drug Discount Card to be eligible.
various types of food. Available in bothEnglish and Spanish, this brochure provides
To find out which cards offer the Renagel
discount, talk to your Social worker or call
You also may want to review the Network’s
! Conventional home hemodialysis –Three times a week hemodialysis, 3-4
If you are considering home dialysis, keep
! It isn’t the answer for everyone.
suitable place in the home for setting up
(www.kidneypatientnews.org) has linked to
Lynchburg Nephrology Web site whichcreated a series of video clips featuring
There’s a lot to consider and prepare for
Medicare and/or your personal insurance.
page at www.medicare.gov) and comparethe different treatment options and
services found at local dialysis facilities. RENAL OUTREACH Address Service Requested The Renal Network, Inc
911 E. 86th Street, Suite 202Indianapolis, IN 46240Phone: 317-257-8265Patient line: 800-456-6919
Jay Wish, M.D., President Susan A. Stark, Executive Director Kathi Niccum, Ed.D., Editor Patient Services Director Patient Web site: www.kidneypatientnews.org Email: firstname.lastname@example.org
This newsletter is published under CMS Contracts 500-03-NW09 & 500-03-NW10
KITSAP COUNTY DISTRICT COURT, STATE OF WASHINGTON ORDER APPROVING TREATMENT PLAN, SETTING CONDITIONS AND ACCEPTING DEFENDANT FOR DEFERRED PROSECUTION THIS MATTER having come on for hearing on the ______ day of________________________, 20_____; the defendant, appearing in person represented by____________________________________; the plaintiff being represented by the Kitsap Co
Phase III Randomized Trial Comparing Docetaxel in Combination with Doxorubicin and Cyclophosphamide (TAC) Versus Doxorubicin and Cyclophosphamide Followed by Docetaxel (AC → T) in Her-2/neu Negative Early Breast Cancer Patients 1069 with Positive Axillary Lymph Nodes: Interim Analysis of the BCIRG 005 Study Eierma