Past Issues
Spring 2006
KidneyTalk!
Arriving in June
by Lori Hartwell, RSN President
Most people who know me would probably say, “Lori likes to talk!” I do enjoy
people, and I do enjoy learning new things and sharing the knowledge I have
acquired over the years. So I am very excited about Renal Support Network’s
latest project,“KidneyTalk!”
KidneyTalk! is an online radio talk show that, beginning in June, will stream
health, happiness, and hope over the Internet. I am absolutely thrilled that my
KidneyTalk! co-host is Stephen Furst, an accomplished television and movie
actor/producer/director recently diagnosed with end-stage renal failure and now
on dialysis. We are having so much fun creating these shows and interviewing
guests.
Stephen is best known for his roles as Flounder in the movie “Animal House,” Dr.
Elliot Axelrod in the TV series “St. Elsewhere,” and Vir Cotto in the TV series
“Babylon 5.”
A new half-hour show will be uploaded to the KidneyTalk! webpage (located on the
RSN website, www.RSNhope.org) every Tuesday at 2:00 p.m. Pacific Time, and will
also be accessible as a podcast. Each show will be available online 24 hours a
day, seven days a week.
In preparation for the debut of KidneyTalk!, interviews have already been
conducted with the following:
• Jodi Picoult, a best-selling novelist and author of “My Sister’s Keeper,” the
story of a young woman conceived in order to be a blood cell and tissue donor to
her older sister, but who resists when asked to donate a kidney.
• Peter Quaife, a former member of the British rock group “The Kinks,” who began
hemodialysis in 1998. To pass the time, Peter began drawing cartoons about what
went on at his dialysis clinic. A collection of his cartoons was recently
published under the title “The Lighter Side of Dialysis.”
• Comedian Howie Mandel, host of the TV game show “Deal or No Deal,” on finding
your sense of humor when living with a chronic illness.
Additional interviews include: two patients who provide real-life advice on
dating, a nephrologist who discusses the considerations of pet ownership, and a
discussion on how patients benefit by having a fistula placed first and how to
care for it.
The goal of this unique undertaking is to convey—in an informal, radio show
format—practical advice on living well in spite of chronic kidney disease. You
will hear from people who have not let kidney disease stand in their way, and
from others who were inspired to take better control of their lives.
KidneyTalk! is interactive, so if you have an idea for a future show or guest,
or just have a general comment about living with chronic kidney disease, we’d
love to hear from you.
You can send us an e-mail at info@rsnhope.org, or leave us a voicemail at
(866) 379-HOPE (4673). This is a toll-free number, and select voicemails will
air on upcoming shows. We look forward to hearing from you!
Chronically Yours,
Lori Hartwell
President & Founder of Renal Support Network
On Top of the World
by Dawn Dungan, weKAN Patient Activist & PEPP Speaker
Wife. Singer. Sister. Teammate. Aunt. World Champion monoskier. Daughter. Kidney
patient. Songwriter. Role model.
Lacey Heward wears many hats, both professionally and personally. As a member of
the U.S. Disabled Alpine Ski Team, she is competing in the 2006 Paralympic Games
in Sestriere (Torino), Italy, as this article is being written. The Paralympics
are equivalent to the Olympic Games, except they are for disabled athletes.
Lacey was injured at 16 months old when a 100-pound barbell fell on her back,
crushing her spine and leaving her wheelchair-bound. Growing up in an active
family, which included four sisters and a brother, Lacey learned early on to
keep up with them or risk being left behind. And Lacey isn’t one for being left
behind.
In 1999, she decided she wanted to take her love of skiing to the next level, so
she began racing competitively. By 2002, she had won her way into the
Paralympics and a bronze medal. Later, as the number-one-ranked woman monoskier
in the world, Lacey was diagnosed with kidney failure.
“It was a huge surprise to me,” says Lacey. She was taken completely off guard
by the diagnosis. “I thought I was just exhausting myself with the training.”
She says she found huge support from her family, friends, teammates, and
coaches, all of whom wanted to see her ski again. She acknowledges that it took
her some time to think about it and feel good enough to get back into skiing.
But once again, Lacey isn’t one for being left behind.
Lacey chose CAPD as her dialysis modality and began training again. She also
continued to write songs, sing, and perform, which is another love of hers. In
January of this year, Lacey was invited to perform at RSN’s Renal Teen Prom,
which is held annually in Southern California.
“The prom was great! I think it’s such a fantastic idea,” says Lacey. “I know
what it’s like to be in their position, when you miss your prom and you miss all
your fun events because you’re in the hospital or you’re sick. I think the Renal
Support Network did a fantastic job putting it all together. I was really
honored to be a guest and be a part of it.”
Lacey enjoys being a positive role model: “I think there needs to be good
messages out there. We really need to hear something positive, and I think that
we are more powerful than we think we are. Having more positive influences,
messages, and events in our lives is really going to help us heal.”
Author’s Biography
Dawn Dungan is a kidney transplant patient who lives with her husband in
Billings, MT. Throughout her 20 years with kidney disease she has learned many
lessons about life, which she shares through writing and public speaking.
PEPP: From Patients to Experts
Training in Los Angeles Yields Friends and Trained Speakers
by Tiffany Strohmeyer, PharmD, PEPP Speaker
It’s been said that people fear public speaking more than anything else. I
thought about this while on a plane bound for Los Angeles this past January,
where I would spend the next four days learning to become a speaker for RSN’s
Patients Educating Patients & Professionals (PEPP) program.
At that moment, I didn’t know what I should be more afraid of—the possibility
that the plane could crash, or the possibility that we’d land safe and sound and
I would actually have to speak in front of people!
Okay, so maybe I’m exaggerating just a bit. Actually, I was excited and honored
to have been chosen to take part in the PEPP program, but I was nervous. I
really didn’t know what to expect. After all, flying into Los Angeles made me
feel a bit like maybe I was going to be in a new reality TV show.
I could almost hear the tag line… “Twenty kidney patients from around the
country—on different modalities and with their own unique stories—are plucked
from their dialysis and transplant centers and sent to live together in Los
Angeles for four days. Sure, they survived kidney failure, but can they survive
Jack Barnard, professional speaking coach?!”
Actually, the idea behind the PEPP program made a lot of sense. Who could be
more qualified to talk to people about living with kidney failure than those who
actually live with it? We have faced the reality of kidney disease and have
something to say.
I have spent over half of my 30 years living with kidney disease. The idea of my
teaching patients about things like anemia, secondary hyperparathyroidism, and
how to actively participate in their treatment plans made perfect sense. Why?
Because those things had major and lasting impacts on my life and generated
experiences that I could readily share.
We spent the first morning getting to know each other and sharing our personal
stories. Then professionals gave the three presentations, in their entirety,
that we were to learn.
What at first seemed to be a daunting task fell into place as we broke each
presentation down into small parts and went through them over and over again,
practicing in front of the others. We also told and retold our personal stories.
At times it was completely exhausting, but somehow we got it done.
In just a few short days we were transformed from ordinary kidney patients into
experts on anemia, secondary hyperparathyroidism, and adherence. But even more
importantly, we went from being a group of 20 strangers to a group of 20
friends, armed with three fantastic presentations that we can’t wait to share
with everyone!
Author’s Biography
Tiffany Strohmeyer, PharmD, first started on peritoneal dialysis (PD) when she
was 15. While working on her Doctorate in Pharmacy degree at the University of
Kansas, she received a kidney transplant from her mother. In 2005, Tiffany
returned to PD and is waiting for a second transplant. She works as a pharmacist
and is returning to school to complete a PhD in clinical psychology.
PEPP: Making an Impact on Life
by Jim Dineen, PEPP Speaker
It’s been said that people fear public speaking more than anything else. I
thought about this while on a plane bound for Los Angeles this past January,
where I would spend the next four days learning to become a speaker for RSN’s
Patients Educating Patients & Professionals (PEPP) program.
As I wrote this story, two words replayed continuously in my mind—moving and
motivational. These words summed up my experience in Los Angeles while training
to become a PEPP speaker. PEPP stands for Patients Educating Patients &
Professionals, and is a new program of the Renal Support Network.
Before the word kidney became a part of my everyday vocabulary, I was a trainer
and speaker on such “exciting” topics as “Outplacement: How To Find Your Next
Job.” But as my grown daughters reminded me before I left for my PEPP training,
now I’ll have something to speak on that actually counts!
As the training began, I sat bewildered over my apparent lack of knowledge of a
disease I thought I understood.
Words like “hyperparathyroidism” and “erythropoietin” just rolled off the lips
of some of the other PEPP speakers. We worked with motivational speakers and
medical professionals who helped us—a group of mostly novice speakers—become
proficient.
Watching and listening to the 20 or so PEPP speakers as they told their stories,
and spending time getting to know these new friends, was truly one of my
greatest life experiences. But as much as I was moved and stirred to action, I
was also motivated.
Many of the PEPP speakers have been on dialysis for more than 20 years, stick
themselves with needles every day to control their diabetes, have had more
surgeries than I care to count, and still strive to inspire others to overcome
their illness.
I realized I could never again say “I know just how you feel” as I learned of
their varied experiences with kidney disease. Each and every one of them
motivated me to find new and creative ways to educate people on what this
disease does and what it costs in terms of feelings, emotions, families,
friendships.... I will forever be ignited, affected, and grateful.
For four enlightening, inspirational, educational, moving, and motivational
days, we had fun.
At the beginning
of his weekly TV show, Jerry Seinfeld would say that the two greatest fears are
fear of death and fear of public speaking, and not in that order. In Los Angeles
we learned that the latter may not be so frightening after all, and that a small
group of people—who have undergone some of life’s most difficult
experiences—will truly make an impact!
Author’s Biography
Jim Dineen, from West Chester, OH, was diagnosed with kidney failure in 1998.
After three years on dialysis, he received a kidney in November 2003 from Joyce,
his wife of more than 40 years. They have two married daughters, three
grandsons, one new granddaughter, and another grandchild due in August. In June
2004, their story was featured in Reader’s Digest. It focused on how kidney
disease dramatically affected their family and brought them closer together.
Princess for a Day:
A Community Event in a Blessed Life
by Martinlow V. Spaulding, MAA, BA, weKAN Patient Activist & PEPP Speaker
Despite having lived the past 14 years with kidney failure, my life has been
blessed in countless ways. Because of this, I want to give back to my family,
community, and other people with chronic kidney disease. My greatest blessing
has been to be a “Daddy” to my six amazing children (one boy and five girls!),
so I welcome any opportunity to be involved in their activities.
I was diagnosed with kidney failure in 1992 and was started on peritoneal
dialysis (PD). The following year, my brother, Paul, gave me the “gift of life,”
a kidney. Following that kidney’s rejection 10 years later and another stint on
PD (CCPD), my sister, Rita, gave me one of her kidneys. These precious gifts
made me aware that family was the greatest gift of all, and I was determined to
do all I could to enhance the lives of not only my own family, but the lives of
others as well.
Do Dads Club
As a member of my childrens’ Do Dads Club at Heather Hills Elementary School in
Indianapolis, I have the joy of organizing events for the students and their
families. My goal is, “Leave them with an experience!”
The Do Dads Club grew out of All Pro Dad, a part of the Family First Foundation
led by Tony Dungy, head coach of the Indianapolis Colts football team. Tony
wanted to raise awareness about dads who participate in the lives of their
children.
As a way of giving back through the Do Dads Club, I organized a “Princess For a
Day” gala at the school, allowing dads to show their daughters how very special
they are to them. (Not to leave out the sons, “princes” were also welcome to
attend.)
Once Upon a Saturday Morning
The school gymnasium was decorated in the style of a fairy tale castle.
Following a special breakfast fit for a king (or was it fit for a princess?),
each girl—wearing a darling princess outfit and priceless smile—was escorted by
her dad into the gym through a brightly lit entrance. The dads wore “king”
crowns they had made with their girls, but it was the princesses who ruled the
day, and the kings bowed to them and obeyed their royal commands.
Upon entering the castle, every princess received a royal makeover complete with
colorful face makeup, beautiful hairdos with bright accessories, shiny
fingernail polish with glitter, and sparkling jewelry. It surprised the dads a
bit when the princesses “commanded” that the dads should have fingernail polish
as well, but all complied and were actually showing off their dazzling nails.
Then a very special moment: The princesses and kings danced to fairy tale music.
Afterwards they
received a photo of the royal couple for an everlasting memory. Everyone enjoyed
the royal celebration and lived happily ever after.
Giving of Yourself: The Most Priceless Gift of All
“Leave them with an experience” is my philosophy when organizing a community
event. Princess For a Day is an awesome experience (and now an annual event). It
allows dads who would probably never think of doing something like that a chance
to be more loving toward their daughters.
My life is also blessed with other fulfilling “give back” activities. One
program I organize is the Child Care Exchange, providing parents with a monthly
night off to share special time with each other. The Exchange parents take turns
babysitting at the school while they and the kids enjoy dinner and a movie. I
also co-chair the school’s Talent Showcase, which encourages dads to perform
with their children.
Many dads choose to be a “provider” for their children by giving, giving, and
giving things to them instead of giving the most priceless gift of all—their
time! I believe the greatest gift that any dad can leave his community is not
money or items, but legacies... his children.
Live for others!
Author’s Biography
Martinlow V. Spaulding, MAA, BA, has been both a dialysis and kidney transplant
patient since 1992. He is a recipient of The Renal Network’s (ESRD Network
9/10’s) Patient Services Award and Felter Patient Memorial Award. He had careers
in nonprofit administration since 1990 but currently is an Organizational
Behavior Domestic Engineer (“Mr. Mom”). Martinlow, with his wife Elaine (a
kidney/cancer nurse) and their six children live in Indianapolis, IN.
Slip, Slop, Slap
Preventing Harmful Effects of the Sun
by Lori Hartwell
Warnings about the damaging effects of the sun’s ultraviolet (UV) rays on the
skin have been at the forefront of health advice for years. As a kidney
transplant recipient, I know that the chance of getting skin cancer is much
higher for me than for the rest of the population.
The body’s natural immune system destroys cancer cells every day, but when you
take immunosuppressant medication following a transplant, you are at somewhat of
a greater risk of developing cancer. If you are on dialysis, your immune system
may be weakened as well, so it is critical to protect your skin too.
Early detection and treatment of skin cancer is key. Remember to conduct
self-exams regularly, including on your scalp. It is also a good idea to see a
dermatologist periodically.
Slip, Slop, Slap
The American Cancer Society developed a campaign—Slip! Slop! Slap!—to encourage
everyone to cover up when outside in the summer sun:
Slip on a shirt or other protective clothing.
Slop on a “broad-spectrum” sunscreen (one that protects against both UVA and UVB
rays. Apply to all exposed skin at least 20 minutes before venturing out.
Slap on a hat and UV-protected sunglasses, or bring a light-colored umbrella if
you’re going somewhere where there is no shade (black umbrellas absorb heat).
The sun’s rays tend to be strongest between 10 a.m. and 4 p.m., so try to
schedule outside events to avoid those times. On cloudy days, be sure to cover
up; even if the sun’s visible rays aren’t getting through the clouds, the UV
rays are.
Choosing a Sunscreen
There are many sunscreen products to choose from. A product’s “sun protection
factor” (SPF) rates the level of sunburn protection that it offers. The higher
the SPF, the higher the sunburn protection.
Say you normally get a sunburn in 20 minutes. If you apply an SPF 15 sunscreen,
you’ll be protected for about 300 minutes (SPF 15 x 20 minutes = 300 minutes).
Sunscreens with an SPF of 15 or higher are generally thought to provide useful
protection. Very fair-skinned people probably require an even higher SPF (ask
your dermatologist).
Here are a few tips to help choose a sunscreen that’s right for you:
Look for a sunscreen that’s waterproof if you’ll be in the water or sweating a
lot.
Skin-care products, such as moisturizers or make-up, that also contain
sunscreen (SPF of at least 15) are a real time-saver.
Always check the expiration date on your sunscreen. It will not be effective
if it has expired.
Buy an extra tube of sunscreen and keep it somewhere handy (in your car or
purse) for unscheduled activities in the sun.
With a little precaution and common sense, you can enjoy your time in the sun!
Look for These Signs of Skin Cancer
- Any change on the skin, such as a new darkly pigmented growth or spot, but
especially in the size or color of a mole.
- The spread of pigmentation beyond its border, such as with a mole or freckle.
- A spot or growth that continually itches or hurts, becomes crusty, or bleeds.
- A sore that does not heal.
The World or Bust
by Bill Peckham, weKAN Patient Activist
Why do I travel? I think it comes back to how I deal with kidney disease and
life in general.
I live in the moment—which, let me tell you, has its significant drawbacks. I’m
never prepared for tax season; in fact, I’m terrible at managing money. As long
as I have a couple of bucks in my pocket, I’m good to go. I also lose track of
friends.
If I’m with you, or if I see you every day, or if you make it onto my Yahoo
calendar, then you have my undivided attention. But change routines or move and
I’ll not be the one who keeps in contact.
On the other hand, living in the moment does have its advantages. With kidney
disease, living in the moment has allowed me to free myself from expectations. I
wake up, the legs work, the eyes see, and I’m ready for the day. I generally
don’t worry about a shortened life span or about what 15 or 30 more years of
dialysis may hold.
My expectations are short-term: the morning walk, tonight’s dinner, the next
trip, because if there’s ever a time to be in the moment it’s when you’re
traveling. The greatest moments I’ve ever had (and some truly dark moments too)
have been while traveling. It is while traveling that life seems most real, the
most detailed.
Why bother traveling? When I write about my travels, I like to report on the
beautiful beaches, the lovely people, the great food.
But, there are other places, and there are other days. Places where you wonder
why you ever left home, and days you want only to forget. Marseilles was
horrible, but when I find myself in a Marseilles, I just get on a train and find
a Florence.
When I’m traveling, my goals are immediate: food, rest, and (most recently in
Cancun) learning Spanish. My expectations are few. Tomorrow I may rendezvous
with a friend I’ve known for over 35 years, a friend who lives in the opposite
corner of the country, but who I see more often than friends who live across
town because we both love to travel. Or tomorrow I may be alone, but content.
Content to explore an unfamiliar landscape and marvel at the world before my
eyes.
Since starting dialysis in 1990, I have been to 29 countries, dialyzing in 19,
on five continents. I have an informal goal of getting to 50 countries, so I’m
already 60 percent of the way there.
Why do I travel? I travel to live life, the full spectrum. From floating on my
back in the dark waters of a magical cenote (an underground natural pool) to
holding the hand of an unconscious loved one far from home, it is life, and life
is most clear to me when I leave home and see what is over the horizon.
Why do I travel? Because when I leave home I wake up.
Editor’s Note: Read more about Bill’s travels
around the world at
www.globaldialysis.com. Go to “Blogs” and select “Bill” from the Author
list.
Author’s Biography
Bill Peckham has undergone dialysis since 1990. In 2002 he was the first person
to use the Aksys PHD®, after its FDA approval, for short daily home hemodialysis.
Bill serves on the board of trustees of the Northwest Kidney Centers in Seattle,
WA, and recently received NKC’s prestigious Clyde Shields Award for making a
significant contribution to the welfare of kidney patients.
Update on Kidney Care Bill
weKAN Patient Activists Again Converge on Capitol Hill
At this time a year ago, 20 weKAN patient activists—representing 16
states—traveled to Washington, DC, to meet with their elected officials. Over
the course of only two days, the patients met with 55 members of Congress and/or
their aides.
The patients—trained in advance and knowledgeable about the points of the Kidney
Care Quality and Improvement Act of 2005 (S. 635, H.R. 1298)—educated their
lawmakers about the bill and asked each one to become a cosponsor. The results
exceeded all expectations! Eight members of Congress became cosponsors of the
bipartisan bill that day, and others signed on in the days following.
Due to the great success of last year’s effort, the Renal Support Network is
again sending weKAN patient activists to Capitol Hill, in mid-June. This time,
the patients will be honing in on key members of Congress who could help assure
the bill’s passage, as well as legislators from states not visited last year.
The goal is not only to gain more cosponsors, but to build relationships and
help lawmakers “put a face” on kidney disease. One of the comments by a
legislator heard last June emphasizes the importance of building those
relationships: “Patients tell the truth; that’s why we listen to them.”
The bill’s main points include increased patient education, national
standardized training for dialysis technicians, reimbursement incentives for
placement of fistulas, removal of barriers to providing home dialysis options,
and an annual increase to the Medicare composite rate (the payment per treatment
provided to dialysis clinics).
We reported in the Fall 2005 issue of Live & Give that there were 120 cosponsors
in the House and 19 in the Senate. As of the end of May 2006, those numbers have
increased to 146 in the House and 23 in the Senate!
After weKAN patient activists again converge on Capitol Hill this June—building
relationships and having fun—you can expect those numbers to increase even
further! Look for the report in our next issue of Live & Give. Or, for a sneak
preview, check out the number of cosponsors on our website, RSNhope.org.
Take Action – Contact Your Senators and
Representatives!
Ask them to cosponsor the Kidney Care Quality and Improvement Act of 2005. In
August, please take the opportunity to meet with them when Congress takes a
break and members are in their home offices. You can find information on how to
contact them, including sample letters, at RSNhope.org.
