Past Issues
Spring 2007
Persistence & Hope
– A Winning Combination
By Lori Hartwell
Anyone who has ever gotten anywhere in life will tell you that they exercised a
lot of stiff-lipped persistence. When recalling the early days of their career,
few successful entrepreneurs can forget the rejections they endured, along with
plenty of nail-biting and toe-tapping.
Likewise, every person who is living well despite chronic kidney disease is
doing so because of stubborn persistence. It is that refusal to give up despite
some very rough going—along with hope that things will get better—that
characterizes the achiever.
The area of personal strength in which I take the most pride is my persistence.
In managing my chronic illness, I’ve found persistence to be key in allowing me
to feel a sense of control over my destiny. As my healthcare workers will tell
you, I never quit! When I have a question, I don’t give up until I get an
answer. If one doctor doesn’t give me the information I need, I go to another
one, or I’ll look something up on the Internet, or I’ll find a nurse or some
expert who is willing to help me.
I am also unyielding where my dreams are concerned. I learned early on that if I
did not nurture the hope that I would fulfill my dreams, I would not want to
take care of myself.
Just as winners must exercise persistence, in most cases they must also wade
through a sea of negative feedback. The world has no shortage of people who will
try to convince you that your dreams are silly. They might not say it in so many
words, but they imply it by saying, “Are you sure that’s realistic?” or “Gee,
that seems like an awfully big challenge!”
My dream was to find a way to provide hope to those who have kidney disease and
those who care for them. I have certainly encountered many obstacles over the
years, but I just kept pursuing my dream anyway! Now I can proudly see the
tangible results of my persistence.
After more than 12 years, the Renal Support Network (RSN) continues to serve the
kidney community by instilling health, happiness, and hope through education,
advocacy, and awareness... one person at a time. RSN fulfills this mission by
offering many unique programs such as KidneyTalk, KidneyTimes.com (RSN’s new
health information website), PEPP, weKAN, the Renal Teen Prom, and Patient
Lifestyle Meetings. You are holding one of the dreams—this newsletter!
Fred Astaire was told he couldn’t dance. Walt Disney was admonished for lacking
creative talent. The next time someone tells you that your ideas are silly,
unrealistic, or overly optimistic, use that feedback to fuel your determination.
Then put your nose to the grindstone and start chipping away at the obstacles.
Whether the issues involve daily choices related to your illness, lifestyle
decisions, your career, or your relationship with your family or friends,
remember the vital keys to success—persistence and hope.
The “Fab Five” for
Healthy Weight Loss and Maintenance
By Mandy Trolinger
Have you ever lost 10 pounds, only to realize all too soon that you had gained
it all back, plus some? Short-term diets might be good for losing weight
quickly, but if you do not change your habits there is a strong probability you
will gain the weight back. Lifestyle changes not only help you lose weight, they
also help you maintain that weight loss for life.
The following tips are lifestyle changes and therefore take time to establish.
If you add a new healthy habit gradually—every one or two weeks—you will soon
realize that these changes have become part of your everyday life.
Don’t Forget the Fiber
Fiber has been shown to protect against colon cancer, lower cholesterol,
regulate blood sugar levels, and help with appetite control by providing a
feeling of fullness. High-fiber foods include fruits and vegetables (with the
skin when it’s edible), dry beans, bran, barley, peas, and raspberries, to name
a few. It’s best to get your fiber from food, but a fiber supplement can help as
well. Ask your dietitian whether you get enough fiber and whether a supplement
is right for you.
Dine Out Sensibly
At a restaurant, order a half-size portion or split a meal with a friend or
family member. You can also ask for a “to-go” box when you place your order.
When your meal arrives, immediately put half of it in the box and set it aside
to take home. Not only will you decrease your calorie intake, you will also get
two meals for the price of one!
Manage the Munchies
Always be prepared for those moments when you get the munchies by keeping
healthy snacks on hand. Pick one day during the week to cut up fresh vegetables
and make a low sodium dip. Keep them in the refrigerator so you can easily grab
a healthy, convenient snack. For an “on-the-go” snack, try a low-calorie protein
bar (less than 150 calories). The protein will help diminish your hunger pangs.
Use the Buddy System
Team up with a family member, friend, or fellow patient to encourage each other
to make healthy food choices. You and your buddy can also set up times to
exercise together and to discuss progress toward your health goals. If competing
with others motivates you, organize a contest to see who can lose the largest
percentage of weight in a certain amount of time, or who can meet predetermined
exercise goals.
Calculate How Much
People often misjudge what one serving should look like. Go to your kitchen and
get the dishes you eat from most often. Measure out one cup of cereal and pour
it into a bowl. Does it seem like more or less than you usually eat? Another
trick is to use small plates and bowls. This will help you to fill your plate
with less food, causing you to think you are eating a larger portion.
And remember: Take the time to savor every bite. You deserve it!
Author's Biography
Mandy Trolinger, MS, RD, currently works both as a project coordinator for RSN
and as a renal dietitian. She has been on hemodialysis, and is a two-time kidney
transplant recipient. In her spare time she volunteers, exercises, and spends
time with her husband and pets. She resides in Highlands Ranch, CO.
New Bill Introduced in
Congress
By Lori Hartwell & Virna Elly
During the final few weeks of 2006 and the 109th Congress, the “Tax Relief and
Healthcare Act of 2006” (H.R. 6111) was passed. At first glance, it may seem
that this bill has nothing to do with chronic kidney disease (CKD). In truth
however, it does. At the last minute, key Medicare provisions benefiting the
kidney community and kidney patients were added. These provisions include a
one-time 1.6% increase to the composite rate beginning April 1, 2007, as well as
a requirement that the Government Accounting Office (GAO) submit a report about
the payment rates for home dialysis to Congress by January 1, 2009.
New Bill Introduced
On February 27, 2007, Senator Kent Conrad (D-ND) along with Representatives Dave
Camp (R-MI) and John Lewis (D-GA) introduced a new bill called the “Kidney Care
Quality and Education Act of 2007” (KCQEA 2007), bill numbers S. 691 and H.R.
1193 respectively.
During the 109th Congress, a similar sounding bill called the “Kidney Care
Quality and Improvement Act of 2005” had been introduced. Although there were
223 co-sponsors for both the House bill (H.R. 1298) and Senate bill (S. 635)
combined, because the bill was not passed before the end of the 109th
Congressional session, the bill language was updated and introduced under its
new name and bill numbers.
What Patients Should Know
The KCQEA 2007 contains provisions that are of importance to patients. A simple
way for patients and patient advocates to remember these provisions is: HEART.
Home dialysis: seeking to understand the barriers to the adoption of
different treatment modalities by patients.
Education: providing educational sessions for Medicare beneficiaries with
Stage IV CKD to teach them how to slow the progression of the disease.
Awareness: creating public and patient education initiatives to increase
awareness about CKD and to help patients learn self-management skills that
prevent and control CKD.
Reimbursement: establishing a three-year Continuous Quality Improvement
Initiative that would reward providers for quality improvement and outcomes. If
the provider meets these goals, they receive a bonus.
Technicians: establishing a uniform training for patient-care dialysis
technicians.
And why is this so important to patients?
This piece of legislation addresses issues that lie at the very HEART of kidney
patients and their families, as well as renal-care professionals.
We, as patients, will have the opportunity to look at what problems could be
keeping us from choosing the treatment modality that works best for us,
including dialysis at home. And education is essential for better healthcare.
Don’t we all wish we had a little more knowledge to help us understand our
disease? Awareness for those who are at risk for kidney disease is empowering.
The reimbursement component in this bill will improve upon and update the system
we currently have. And the implementation of systematic training for
patient-care technicians is something we’ve all talked about.
This is a dynamic opportunity for us as patients to get involved and lend our
support to such an important piece of legislation. In doing so, we will help
many people. With all of us working together hand-in-hand, we can make a
difference!
How You Can Help
Contact your legislators. Call, visit, and write to them to share your personal
experiences with CKD and your support for the bill. Help educate them about the
challenges faced by you and other CKD patients, and help raise awareness of CKD
and the ties between CKD, diabetes, and hypertension. Please also visit the
“Current Legislation” section of our website at RSNhope.org for additional
information, tools, and resources.
Author's Biography
Virna Elly is Project Manager-Advocacy for the Renal Support Network. She is
working on her Master’s in Government/Policy. She recently celebrated the
one-year anniversary of her successful kidney-pancreas transplant.
NASCAR Angels Help
a Prom Volunteer — RSN Receives
Unexpected Gift
by Tim Ryder, RSN Staff
It all started with the Renal Teen Prom, held on January 15 at Notre Dame High
School in Sherman Oaks, California. Organized by the Renal Support Network (RSN),
the Renal Teen Prom usually garners a lot of publicity, and this year an article
that appeared in the Los Angeles Times caught the attention of the NASCAR
Angels.
Who are the NASCAR Angels? That’s the same question Lori Hartwell, president of
RSN, asked when she received a call from a representative of the organization,
which had decided to do a car makeover for one of RSN’s prom volunteers.
Hosted by Rusty Wallace (former NASCAR champion) and Shannon Wiseman, the NASCAR
Angels television show airs across the country on Sunday afternoons.
Shannon first films an interview with the chosen person or organization on
location. Over the next few days, the process of repairing the vehicle—both
mechanically and cosmetically—is also filmed. The show ends with a grand finale:
the revealing of a like-new car in front of a live audience of family and
friends. It’s a very positive show that features and helps people who are making
a difference in the community.
Since the NASCAR Angels wanted to help a prom volunteer, Lori chose Rhonda
Brooks, a long-time RSN volunteer who chauffeured teens to this year’s prom.
Rhonda donated her spunky little Honda for a long-overdue makeover.
During the few days that the NASCAR Angels mechanics worked on Rhonda’s car,
Shannon interviewed Lori and learned more about RSN. To accurately portray RSN’s
contribution to the community, she asked Lori to take her to a dialysis clinic.
The film crew accompanied Shannon as she met patients and learned about
dialysis.
Then, at 10 a.m. on Wednesday, February 21, a small crowd gathered at the
Mountain View Tire Center in Burbank, California, but unfortunately Rhonda had
become ill a few days before and could not attend. In the hope that they could
interview her after she recovered, film crews set up their equipment to document
the unveiling, and the show went on.
A group of RSN staff, volunteers, and board members, as well as Donate Life
representatives, came to take part in the festivities. To begin the program,
Shannon interviewed Lori Hartwell. Then, the moment everyone was waiting for
arrived: Rhonda’s made-over Honda was revealed.
Shannon pointed out all the things that had been done to the car, and then she
said to Lori, “We have a surprise for you too!”
The door of the garage opened, and as everyone watched in amazement, a shiny
Ford Econoline passenger van rolled out. It even had RSN’s purple logo freshly
painted on the doors.
Lori was stunned! Everyone clapped and cheered as one of the NASCAR Angels
opened the van door and invited Lori to sit in the captain’s seat. This was
truly a grand finale to an al- ready exciting day!
If you live in Southern California and happen to see a white van with RSN’s logo
on it heading to a patient lifestyle meeting or taking visitors to dialysis,
honk and wave!
RSN sincerely thanks Goodyear Tires and the NASCAR Angels organization for
making this a magical day that we’ll never forget.
To learn more about the Nascar Angels and when the show airs in your community,
visit www.nascar.com/auto/angels.
RSN will post an announcement on RSNhope.org when our show is due to air.
Author's Biography
Starting out as a volunteer driver for the Renal Teen Prom, Tim Ryder has now
been part of the Renal Support Network staff for two years. He assists with
program coordination and finances. He has a bachelors degree in Economics &
Statistics from Cal. State Los Angeles, and previously worked as a production
coordinator for Baxter Healthcare in Glendale, CA.
Can Women on
Dialysis Bear Children?
by Jean L. Holley, MD
Although we don’t know exactly why, pregnancy in women on dialysis is relatively
rare. One of the many factors contributing to infertility in women on dialysis
is the failure to ovulate due to hormonal changes caused by chronic kidney
disease (CKD). The chance of a woman with CKD becoming pregnant is more likely
if she has just recently started dialysis and still has a fair amount of her own
kidney function.
Though unusual, a successful pregnancy can occur in women on dialysis. There are
few documented statistics in the United States, but a recent report from Europe
described five women on dialysis who all delivered successfully (although
prematurely).
Risks
However, the risk of miscarriage or spontaneous abortion is high (as many as 20%
of such pregnancies end in the second trimester). Reasons for the high rate of
miscarriage are varied and not completely known, though contributing factors can
include high blood pressure and kidney disease.
If a miscarriage does not occur and the pregnancy continues, there is a high
rate of neonatal death, with about 25% of infants dying just before or shortly
after birth. Also, as was true with the European cases mentioned above, most
infants born to women on dialysis will be born prematurely (at an average of 32
weeks compared with usual term pregnancies of 40 weeks).
Most of these infants will also be small for their gestational age, and many
surviving infants will have to spend some time in a neonatal intensive care
unit. One of the reasons these infants are small and born prematurely is that
most women on dialysis who become pregnant have high blood pressure
(hypertension), which can become aggravated by the pregnancy.
More Dialysis Necessary
If a woman on dialysis becomes pregnant, significant changes to her dialysis
treatments will need to be made during her pregnancy. These changes help
maximize the chance that her infant will be born alive.
Longer, more frequent treatments (usually 5-6 days a week) can reduce the risk
of low blood pressure during dialysis due to less fluid buildup between
treatments and more gradual removal of fluid during the longer treatment time.
Low blood pressure during dialysis should be avoided since it can result in low
blood flow from the placenta to the infant. More dialysis also minimizes fetal
exposure to excessive amounts of toxic substances in the blood—such as BUN
(blood urea nitrogen)—that are removed during dialysis.
Steps to Take
To increase the probability of delivering a healthy baby, pregnant women on
dialysis need to commit themselves to dialyzing at least 5 days a week, taking
additional vitamins, eating a diet higher in protein, and, as with any
pregnancy, avoiding alcohol and tobacco. The woman, her partner and family, her
obstetrician, her nephrologist, and the members of her dialysis healthcare team
will all need to work together to increase the chances for a successful
pregnancy.
Pregnancy is not without risk for women on dialysis, but it is possible—and the
outcome can be a healthy baby—if precautions are taken. If you are considering
becoming pregnant, the journey will not be easy. Therefore, the decision cannot
be made lightly. But with the help of your family and healthcare team, it can be
a positive experience.
Author's Biography
Jean L. Holley, MD is Professor of Medicine at the University of Virginia Health
System. She has published on the topic of dialysis during pregnancy and recently
edited an issue of the journal Advances in Chronic Kidney Disease that was
devoted to the topic of pregnancy and chronic kidney disease.
She’s a Star!
by Kathe LeBeau
Once in a while, someone comes along for whom the phrase "She's a star!" is
truly meaningful—not just a casual description applied to celebrities. Rosalyn
Moss is just such a person. She would never describe herself that way, mind you.
An unassuming though spirited woman with quiet strength, Rosalyn has done
something so many of us only wish we could: She tackled the weight loss issue
and she won.
The doctors told Rosalyn that to be eligible for a kidney transplant, she would
have to lose a significant amount of weight. Not an easy task. But Rosalyn made
up her mind, and you get the impression that once she did, success was
inevitable.
"I was scared," she admits. "I was more scared than I had ever been before, and
I cried, not knowing what would happen. I felt sorry for myself." But with what
she says was a combination of a strong faith in God, sheer willpower,
determination, and support from both her family and her fellow patients and
friends, Rosalyn has lost more than 127 pounds in the past year, and she’s still
losing. She’s simply amazing.
Rosalyn truly is a star—a shining example of how determination can overcome this
all too common obstacle for someone needing a transplant. But a celebrity? Well,
when executives at a large pharmaceutical company heard about Rosalyn and her
incredible accomplishment, they decided to capture her story on film.
You can tell that although she’s enjoying it, Rosalyn is still astounded that
anyone is paying so much attention to her and what she did. Having a film crew
follow her around for two days as she went through her normal activities was
quite an experience for her and probably for the film crew as well. It isn't
hard to imagine them running to try and keep up with her.
"I feel so much better since I lost the weight; I hardly get tired anymore, like
I used to," she says. "I go to a dance exercise program now, and I really enjoy
it."
Any transplant surgeon will tell you that the long-term prognosis is
significantly better if the person receiving a transplant is not overweight.
With weight loss, a person’s overall health can improve as well, and Rosalyn can
attest to how that translates into a more active lifestyle. She keeps a schedule
anyone would envy, let alone those of us who often lead a more sedentary life
because of the fatigue associated with kidney disease.
There were other benefits to her weight loss as well. "My husband gave me a long
leather coat for Christmas," she said. "And I had to take it back—it was too
big! That never happened before."
So how did she do it? You can practically hear her shrug her shoulders as she
makes it sound simple: "I just followed the renal diet, and I was very careful.
I just completely cut out anything that was even the slightest bit in question."
As her body adjusted over time to less protein and fewer carbohydrates, watching
her diet became easier. And she also discovered that as she ate less, she felt
full faster, making it easier to stick to her eating plan.
But for Rosalyn, the diet was just the mechanics. The real reasons for her
success are her spirituality, her strength, and her positive outlook. "Live and
let live” is her motto. She tells everyone, “Try to love everyone and
everything—the trees, the birds, the flowers… just love life itself, love your
family and your friends. Most of all, try to love yourself." That’s hard to
forget when you’re around Rosalyn. She really is a star.
Author's Biography
Diagnosed with kidney disease in 2004, Kathleen LeBeau is hoping to receive a
transplant prior to needing dialysis. She has primarily spent her career in
health and human service programs, doing administrative work as well as direct
service. Utilizing her degree in psychology, she currently volunteers her time
as a counselor and mentor to fellow patients. Kathleen lives in the Capital
Region of New York State with her husband of 11 years, Loren Fadding.
Riding in Tandem
by Leesa Westfall
I had never been a fan of bike riding until Bob, my husband, got me a really
nice 24-speed several years ago and taught me how to use it. Wow! Was that ever
an improvement over my old 3-speed!
We began to ride several times a week. It was "our" time together—just us—and it
was great! We dreamed, planned, laughed, and then celebrated our accomplishment
when we completed a long ride. So exhilarating! The phrase "just a little
farther... we're almost there" became our inside joke. Bob used it more than
once to keep me pedaling when we were still a very long way from our destination
and I wanted to quit. Now, I've wised up and will counter, "Oh, really?"
However, as my creatinine has steadily climbed over the past year, I have had to
either make compromises in what I do, or stop doing things completely. I try to
make sure I have enough energy for the things that count most, like spending
time with Bob and our family, and being active in our church where Bob is the
senior pastor. But it seemed that our most enjoyable activity—riding our bikes
together—would no longer be possible. My morale and self-esteem were taking a
terrible beating since I knew that my health was depriving us of something we
really enjoyed.
A friend of ours uses crutches and sometimes a wheelchair to get around, and she
and her husband have a tandem bike. Once they hit the trail, they can ride 30
miles! Motivated by their success despite a disability, Bob and I finally
purchased a tandem, thinking it just might be the solution to our dilemma. Well,
we should have bought one sooner!
There are so many benefits to riding tandem. Before, I kept a death grip on the
handlebars for fear of falling, and the arthritis in my hands would make them
hurt terribly afterward. Now I can rest my hands and enjoy being pain-free.
I get to rest in other ways, too. The person in the back (that would be me!)
just has to keep her feet on the pedals. I don't have to worry about losing my
balance—I had become rather famous for falling off my bike when I tried to slow
down. It reminded me of that old show “Laugh-In.” The old guy is on his tricycle
and just slowly falls over sideways… that's me! I still get the benefits of
exercise because my feet are going around. I’m just not applying pressure—until
the hills. That's when I kick in and start pedaling furiously!
In just a month, we worked up to doing a 16-mile ride without any problems.
Previously—on my own—I became exhausted and out of breath after just two miles!
The tandem bike has many physical benefits for me, but the biggest benefit?
Doing something I love with the person I love!
A few years ago we moved from Ohio to Iowa, so now every year we send out a
Christmas letter to our friends. Last year we included a picture of Bob and me
in our Buckeye shirts just to reassure everyone that we will always be Buckeyes
at heart. In our next letter, we thought a photo of the “Buckeyes” seated on the
tandem would get some laughs. After all, you do know what buckeyes are, don't
you? Just a couple of worthless nuts! But these two “nuts” are having the time
of their lives!
Author's Biography
Leesa Westfall experienced acute renal failure in 1991, followed by hemodialysis
and then CAPD. In May 1992, her sister Ersta gave her the best Mother’s Day
present ever—a kidney. Leesa works part time for Cardiologists, PC, in addition
to supporting her husband in pastoral ministry. They have two grown children,
Heather and Amy. As a member of weKAN, Leesa educates others about kidney
disease.
Oh, Baby!
By Rhonda Brooks
Tania Michael was diagnosed with polycystic kidney disease in 1985, and already
had two young children when she began dialysis ten years later. After three
years on peritoneal dialysis (PD), she found out she was pregnant. “I was
shocked,” she remembers.
Though they supported her decision to continue the pregnancy, her husband,
family, and doctor were concerned about her health. Tania had read that
pregnancy outcomes in women with end-stage renal failure were considered to be
poor, so to ensure that her baby would survive, she decided to learn as much as
she could.
She consulted with several hospitals and doctors to find the obstetrician who
could provide her the best care for her situation, and devoured any articles she
could find about women who became pregnant while on dialysis. Discovering
quickly that such information was scarce, Tania asked her PD staff to help. They
found the results of a study for her to read.
“The statistics in the study were not very encouraging. Out of 14 women, no one
delivered a full-term baby. Some of the mothers miscarried, and others had a
stillborn or deformed baby,” recounts Tania.
She knew these were tough odds and wanted to protect her own life as well as
that of her unborn child. She followed her doctor’s instructions to the letter,
monitored her diet carefully, and took all of her medications. Her PD exchanges
were increased to six times a day to remove added toxins. She also had to visit
the PD clinic more often than once a month.
Despite all these precautions, Tania still encountered many difficulties during
her pregnancy. She struggled with chronic anemia, extremely high blood pressure,
and bouts of severe vomiting. She lost 29 pounds and had to be hospitalized.
She gratefully acknowledges the support—especially the emotional support—she
received from her family. They were a constant presence in her life, taking her
back and forth to doctor appointments, the hospital, and the emergency room.
During this trying time, she stayed positive and put her faith in God. “What
kept me going was my faith in God’s abilities and any extra help that could only
come from above,” she acknowledged.
Following medical advice and staying positive paid off. Thirty-one weeks into
the pregnancy, Tania delivered a healthy baby girl weighing 2 pounds 6 ounces.
Just four weeks later, her daughter had gained enough weight to go home.
“I’m very proud of my daughter because I realize that not only did I have to
have strength, but she had to have her own strength while she was inside me. It
wasn’t only me. I believe that it had a great deal to do with her. When she
born, and also as she grew, she was—and still is—a fighter. She’s not very big
in stature, but she’s very big within herself.”
In February 2001, Tania received a kidney transplant. To educate others about
kidney disease, she shares her story and original songs at concerts throughout
New York City. She also uses her degree in social work to educate patients like
herself who are on dialysis.
Tania and her husband recently celebrated 20 years of marriage. This baby, their
third child, has grown into a happy, healthy seven-year-old girl. Tania sums it
up this way: “I’m very proud of my little fighter.”
Author's Biography
Rhonda Brooks has lived with kidney disease for more than 17 years. She serves
as both a board member and treasurer for RSN. As a PEPP speaker and through her
community involvement she educates patients and healthcare professionals on
various aspects of kidney disease.
