Past Issues
Spring 2005
Welcome!
by Lori Hartwell, weKAN President
Dear Friend,
I am excited to introduce the first issue of the weKAN Live & Give newsletter.
The title of this newsletter represents the core belief system of the Renal
Support Network (RSN) and the weKAN Patient Activists—we can live, and give!
As weKAN Patient Activists, we believe that it is
important to provide hope, encouragement and support to our peers. We need to
help one another get through the trials and tribulations kidney disease can
often present as well as advocate for the best possible care.
Stories of hope, ways to better your life, and ideas on
how to help fellow patients will be the main thrust of our newsletter. Our
newsletter—because “you” becomes “we”—unites fellow patients in our desire to
improve the lives of chronic kidney disease survivors.
In my 35 years of living with kidney disease, I know that experience is the best
teacher. As I have visited over 500 dialysis facilities and given presentations
in over 40 states, it is evident to me that there is a plethora of talent within
the renal patient community. We need you! It is weKAN’s goal to help patients
help patients.
weKAN Patient Activists work to empower fellow patients to
make informed decisions about their care, to become involved in policies that
impact their life, and to speak up. By educating patients on how to become
actively involved in decisions affecting their lives, weKAN promotes
self-advocacy and self-determination.
weKAN Patient Activists are already making a difference.
We are getting to know our elected officials and educating them about kidney
disease and what patients need to ensure quality care. We are planning patient
education meetings around the country as well as being invited to participate as
speakers. In addition, there are many “behind the scenes” committees that make
decisions about our care. Several weKAN Patient Activists are participating on
some of these committees and providing the patient’s perspective.
weKAN is a small group of Patient Activists with big ideas! Our wish is to
inspire you and give you the tools that will help you make a difference in your
community. “An illness is too demanding when you don’t have hope.”
It has been a privilege to work with so many dedicated
Patient Activists who are truly making a difference! A special thanks to Shari
Gilford for all her hard work in creating the layout of this newsletter.
Chronically Yours,
Lori Hartwell
President and Founder of Renal Support Network
Q & A: What is UNOS?
UNOS stands for the United Network for Organ Sharing. In 1977, the South-Eastern
Organ Procurement Foundation (SEOPF) implemented the first computer-based
organ-matching system, dubbed the “United Network for Organ Sharing.” UNOS has
become the primary national organization that coordinates the matching of donor
organs with recipients.
The UNOS Organ Center assists in every aspect of placing
organs for transplantation, including gathering donor information, running the
matching process, assisting with transportation of organs, and keeping the
transplant community informed of current organ-sharing policies. This process is
facilitated through the use of UNetsm, a secure, Internet-based transplant
information database system. This computer network is accessible 24 hours a day,
every day of the year to ensure that each organ reaches the best recipient in
the least amount of time.
To learn more about the mission of UNOS and how it works,
or to order educational materials on organ transplantation, visit their website
at www.unos.org or call toll-free (888) 894-6361.
Ten
Transplant Tips
by Heather Powell
I hope everyone is familiar with the word transplantation. A transplant is not
for everyone, but I encourage you to speak with your doctor today if you are
interested in finding out whether or not you are a good candidate.
Having a transplant can be a wonderful experience, but as in all aspects of
treatment you must do your part. What is your part, you ask? Let’s look at the
top ten things that you need to know to be successful with a kidney transplant.
1. Know your transplant team.
Know each one’s name, position, and phone number. Don’t be afraid to call them
and ask questions if you don’t understand something. Communication is a key
component to any relationship!
2. Know the signs and symptoms of rejection.
Ask your healthcare team for a list of warning signs of organ rejection. Contact
your transplant doctor as soon as possible if you think you are experiencing
rejection. Rejection needs to be addressed quickly in order to bring about the
best outcome for you.
3. Know your medications.
You will take medication for the lifetime of your transplant, so know your
medications well. Keep a list of the name, strength, and dose of each in your
purse or wallet. Know the purpose of each medication, what it looks like, and
when to take it.
4. Be aware of medication side effects.
Inform your doctor if you have any of the symptoms. Know if your medicine
interacts with any foods or other medications. Do not take any other medication
(including over-the-counter and herbal remedies), or get any vaccination without
talking to your doctor first.
5. Keep your appointments.
Clinic and lab appointments are very important. They will be frequent at first
to catch problems quickly, but will decrease once your transplant is stable.
6. Check your vital signs regularly.
Any slight fever, change in weight (3 to 5 lbs), or elevated blood pressure
should be reported.
7. Avoid infections.
Wash your hands often. Keep liquid hand sanitizer or antibacterial hand lotion
in your purse or car. Avoid people with colds, coughs and other infections. Let
someone else clean up after pets. Avoid sun exposure and wear sunscreen. Keep
any skin lacerations clean and covered until they heal. Ask your doctor about
gardening and any dietary restrictions (such as not eating sushi).
8. Follow advice for dental visits.
Consult your transplant team before going to the dentist (this includes routine
cleaning). You will need to take an antibiotic beforehand.
9. Join a support group - share your experience.
It is always good to hear from those who have “been there and done that.” You
will find out that you are not alone, and you’ll have opportunities to encourage
others.
10. Resume normal activity and enjoy your life!
Eat healthy and enjoy the variety of foods you can have now! Drink lots of
water! Include a daily exercise routine! Count your blessings!
Author’s Biography
Heather Powell received a living donor transplant in October 2004 from
her mother after taking a new medication called IVIG which lowers antibody
levels. She was diagnosed with kidney disease in 1982 at age 8, and has
experienced all modes of dialysis including home hemo. During this time she also
completed a BS in Psychology and a Masters in Social Work. She currently works
for the National Kidney Foundation of Arkansas. She attributes all her successes
in life to God’s goodness and blessing.
Winning in the Game of Life:
6th Annual Renal Teen Prom
by Malia Langen
The teenage years are tough. Not too many people will say they felt comfortable
in their own skin during this period of their lives. Throw in being a teen with
kidney disease and the equation gets even more complicated. But the Renal Teen
Prom, held in California each year, provides an opportunity for these teens to
have a great time with others their age who understand the struggle of living
with kidney disease.
On Sunday, January 16, Notre Dame High School in Sherman
Oaks, California, again hosted the Renal Support Network’s 6th Annual Renal Teen
Prom. This year’s theme was “Viva Las Vegas!” and more than 100 young people
with kidney disease (ages 14 to 21) and their guests attended the festivities,
boosting the total count to over 250.
“It’s real fun to get to meet all sorts of people going
through the same thing as me,” said Latrina Spruille, a patient on hemodialysis
who traveled from San Diego to attend the prom.
Although the majority of those in attendance came from
Southern California, this year’s prom attracted teens from outside the Golden
State. Some traveled from Arizona and Texas, a testament to the reputation the
prom is garnering and the lengths young patients will go to meet others in their
peer group.
Notre Dame High School’s gymnasium was transformed into a
Vegas nightspot complete with trees and a real fountain. Table games lined the
perimeter with dealers enticing the teens to try their luck. An Elvis
impersonator got the crowd “all shook up,” and the dance troupe Groovaloos got
everyone dancing.
And what is Vegas without a buffet? A renal-friendly dinner and dessert buffet
was served and appetizers were hand-passed by Notre Dame alumni dressed as Vegas
showgirls.
Actors Gary Sinise (Detective Mac Taylor in CSI: NY; Lt.
Dan Taylor in Forest Gump) and Michael Welch (Luke Girardi in JOAN OF ARCADIA)
dropped by to meet the teens, sign autographs, and have pictures taken with
guests. A teen himself, Michael Welch fit right in at the prom, dancing with the
girls and having fun. He promised to see everyone again next year.
Renal teens got to feel like stars in their own right with
rides in a Hummer limousine. They also had glamour shot pictures taken in a
studio setting so they can remember this special night.
An Enrique Iglesias impersonator, who made a return
appearance at the prom, shared some words of wisdom with the teens. When
referring to the fact that he pretends to be someone else for a living, he
offered, “It is nice to be a pop star, but it is better to be yourself.”
This year’s prom succeeded once again by giving teenagers
with kidney disease a chance to do just that—be themselves—in a fun, welcoming
environment surrounded by friends who really understand them.
Marissa’s Story
Fourteen-year-old Marissa traveled from the White Mountain Apache
Indian Reservation in Arizona to attend the prom. Upon returning home, she told
her social worker that she was amazed to see so many teens with kidney disease.
It was Marissa’s first trip to California (and her first time on an airplane).
Many people helped Marissa come to the prom. Her school raised money. The Apache
Diabetes Wellness Center purchased airline tickets for both Marissa and her
mother. Someone donated hotel points for their California stay. And another
donated a beautiful dress and accessories.
She was excited to meet Hollywood celebrities and had fun
playing Casino games. More than anything, she enjoyed making new friends. She
commented, “I was surprised to see so many teens with kidney disease. I thought
I was the only teenager who had kidney disease.”
She cried when the night was over and had to say good-bye.
However, she reports that she has been receiving phone calls and letters from
people she met on that special night. “They are becoming my best friends.”
Since then, she has been talking more positively about her future. When her
social worker asked her if she would like to go back again, she enthusiastically
replied, “Sure, of course! I can’t wait!”
History of the Prom
Lori Hartwell also was a kidney patient during her adolescent years.
After 12 years on dialysis and a successful kidney transplant in 1990, Lori knew
that having one friend who could relate to what you are going through could make
all the difference, especially in the life of a teenager. With the goal of
getting teens with kidney disease to meet one another in a fun, non-medical
environment, Lori dreamed up the Renal Teen Prom. What better way for kids to
socialize than to get dressed-up, be treated like princes and princesses, and
dance the night away? Teens who might not go to their own high school’s prom
could have a prom all their own.
Unlike most high school proms, the Renal Teen Prom is one that a teen or young
adult can experience year after year. To many of the returning guests, the prom
has become a sort of reunion of friends. These connections are exactly what Lori
Hartwell hopes to instill in the younger generation of patients when she spreads
the philosophy of “One Friend Can Make a Difference.”
Author’s Biography
Malia Langen was diagnosed with kidney failure at age 13 and spent
her teen years on dialysis. She then received a kidney from her mother which has
kept her healthy for the past nine years. Since she can relate to younger
patients, she enjoys helping them learn how to maintain life outside of the
medical realm. For the past few years she has volunteered as a driver for the
Renal Teen Prom.
Pushing Your Comfort Zone
by Sharon Pahlka
It is easy to get stuck in our comfort zones and limit the amazing possibilities
we have in our lives.
Recently, I had a major life transition that pushed me to
try new things.
I have been a member of Toastmasters for quite some time. I have learned that it
is one of the best ways to improve your ability to communicate well, lose your
fears of public speaking, and learn skills that will help you be more successful
in whatever path you’ve chosen in life. (Visit www.toastmasters.org for more
information about this helpful organization.)
I never thought I would have the courage to put my new
skills to work. After some encouragement from fellow Toastmasters, I decided to
enter a speech contest––which scared me to death! But, in the end, it was a
great learning experience and I learned a lot about myself and how much my
speaking has improved.
The audience responded well to my presentation and the
experience opened “doors” that I never expected. This made me realize I have a
powerful message to share with others.
Purposely stepping out of my comfort zone taught me (and
is still teaching me) to carry that fearlessness into other areas of my life and
to experience new and wonderful things. Every time I go through new “doors,”
unexpected possibilities open up for me. And even though I feel uncomfortable
much of the time, I continue because I have seen the benefits.
So try pushing your comfort zone. It is a powerful way to
live.
Life Coach Action Items
Coaching Question
What will it take to face your fear and step out of your comfort zone?
Coaching Tip
Keep a handy list of things you would like to try but haven’t . . .yet.
Homework
Try something you have never done before. Go to a new restaurant, learn
to fence, dance alone in public, write a poem, climb a mountain, join
Toastmasters, volunteer in the inner city, discover the longings of your heart.
Author’s Biography
Sharon Pahlka has lived with kidney disease for over 30 years, 19 years
on dialysis and the last 11 with a transplant from her brother. She is a Life
Coach and speaker, specializing in coaching people with chronic health
challenges. (Go to www.lifeisagift.com.) Her volunteer work includes speaking in
schools about kidney disease, facilitating pre-dialysis education classes, and
working with people in need through a formal program associated with her church.
She likes adventure and travel. She’s crazy about her 2-year-old grandson.
Inaugural RSN National Patient Meeting
Exceeds Expectations
The Inaugural RSN National Patient Meeting – “Health, Happiness & Hope” –
held in Denver, Colorado, last October brought together close to 100 patients
and family members in order to learn and connect. Held in conjunction with the
annual National Renal Administrators Association (NRAA) conference, it also
provided opportunities for professionals and patients to interact.
During the three-day event, patients enjoyed many
informative workshops on topics such as understanding the dialysis machine,
preparing for a kidney transplant, ways to help other patients, and the ins and
outs of patient advocacy. Between workshop sessions, patients and NRAA attendees
mingled around the food and exhibits. At the “Be Your Own Expert” luncheons, a
spokesperson at each table hosted a discussion in which patients could interact
around a specific topic.
Patients and professionals both tried their luck at Casino
Night, and patients enjoyed dinner and dancing to a popular Denver band the
following evening. It turned out that the drummer had just begun peritoneal
dialysis, and he shared his joy at still being able to play drums and lead a
normal life while on dialysis. New friendships were formed as many patients
realized that they are not alone in living with the ups and downs of chronic
kidney disease.
Due to its success, the RSN National Patient Meeting will
again be held jointly with the NRAA conference this fall. Make plans to come to
Chicago, Illinois, from September 29th to October 1st, 2005, for the Second
Annual RSN National Patient Meeting!
Getting Well With Humor
by Terri Melvin
If your doctor ever tells you to lighten up, do not be offended. Such a
prescription may sound ridiculous, but research shows that laughter and a
positive attitude can be healing. There’s nothing funny about kidney disease,
but people are living happy, productive lives today because they learned to
lighten up when things were not going as planned.
Illness can be a stressful event. Hospitalization,
separation from family, invasive procedures, complex technology, or unfamiliar
caregivers can all create feelings of anxiety, loneliness, discomfort, anger,
panic, and depression. These emotions are known to produce physiological changes
that are harmful to the body, which the use of humor and laughter can ease.
Laughter is a pleasurable experience. It momentarily
banishes feelings of anger and fear. It gives us a feeling of power and control.
We feel carefree, lighthearted, and hopeful during moments of laughter.
The Cheapest
Medicine
Most people agree that humor is a stress reliever, similar to other
positive emotions. Laugh and you feel better. Laughter helps the body to provide
its own type of medication. Laughter stimulates the immune system, offsetting
the unwanted effects of stress.
Many believe that humor leads to health and longevity, and
is necessary for human survival. Yet, scientific research in the area of
health-related humor has been sparse. One reason is that until the last two
decades, we did not have the scientific technology to study the biochemical and
physiological effects of humor has been one factor.
But the major obstacle to researching the effects of humor
is that the main focus within the healthcare system is on disease, illness, and
the serious nature of health care.
In reality, humor has always been a form of communication
between patients and healthcare professionals. I can say without hesitation that
I always liked being taken care of by someone who had a sense of humor.
In this age of high technology, scientific miracles, and
medical breakthroughs, it just might be something as simple as laughter that
turns out to be the best medicine. We must think of laughter as an exercise and
make sure we get in a good laugh every day.
Deep in the human psyche, people know that if they don’t
lighten up when things get tough, they’re going to tighten up and snap. Next
time you have on a hospital gown, why not parade around and tell everyone it’s a
new design created by “Seymour Butts.”
Lighten Up and Laugh!
- Learn to Play
Join with some children and help them do a puzzle, color, or play
hide-and-seek.
- Have a Party
Invite a few friends over for an evening of laughing and fun.
- Take a Mini-Vacation
Sometimes getting away can help to lighten our attitude.
- Watch a Funny Movie
Check out the comedy section at your local video store.
- Photo Fun
Find a photo booth, sit down, pull the curtain, and take four funny face
pictures. Carry them in your wallet to look at when you need to laugh at
yourself.
- Read Comic Strips
Find your favorite comic and make a habit of reading it.
- Learn a Joke Get a joke book or go to www.jokes.com
and learn a new one each week. Share it with the dialysis staff and fellow
patients.
- Play a Game Games like Cranium, Pictionary, or
Charades will challenge your brain and lighten your mood.
Author’s Biography
Terri Melvin received a successful cadaveric kidney transplant in
1987. She has been involved with the AAKP for the past 18 years. At age 35 she
returned to school and received certification in Human Services, concentrating
on Drug and Alcohol Studies. She is presently working on an education program
for those in the renal community who work with patients having substance abuse
problems. She has a cat named Nosey.
Enrich a Life – Share Your Knowledge
by Shari Gilford
We’ve all heard the saying “knowledge is power”. It was coined by Sir Francis
Bacon in the 1500’s and yet still has great meaning today.
As someone with chronic kidney disease, I have found that
knowledge has aided my ability to cope with my illness. If you saw me leaving
the local public library, you might see just a pair of legs sticking out beneath
a pile of books! I love to read, and that’s how I learn more about many
different topics, including ways to live a more active life with kidney disease.
Learning Style
What is your style of learning? What activities help you learn? What
are the ways that you learn best, and under what type of circumstances? Do you
like to learn with one-on-one training, by reading, or by listening to someone
teach either in a classroom or on a tape? Do you like to be able to discuss what
you’re learning with others? I like to read, but I also learn best when doing a
hands-on activity.
There is a Chinese proverb that says: “Tell me, I’ll forget. Show me, I may
remember. But involve me and I’ll understand.”
Take a moment to think about something you want to learn
in the next month. Now, think about how you can facilitate a learning
environment for yourself. What steps do you need to take? The Internet, books,
videos, television, cassette tapes, classes, and other people can all be
resources for knowledge.
Suggestions
Let’s say for example that you want to learn how to make healthy
foods that fit your renal diet. You could learn this skill many ways, depending
on your learning style. Below are some options. Remember, these can apply to
anything you want to learn:
- Have someone show you. Find someone who eats healthy
and set up a time when they can show you how to cook specific dishes.
- Listen to an expert. Ask your dietician for
suggestions to add flavor to your diet, and which foods you can include.
- Read. Go to the library and check out some cookbooks.
Or visit www.iKidney.com for a large selection of renal-friendly recipes.
Pick a few new recipes to make and invite others to share your creations.
- Explore creative options. Visit your local health
food store and browse to find new foods to try or ask employees for their
expertise.
- Attend a class and learn with others. Find an adult
education class focusing on eating nutritiously. These are usually offered
at a community college, health food store, library, cooperative extension,
hospital, or recreation center.
As you can see, there are many styles of gaining more
knowledge. Learning helps us to keep active, focused, and involved in life.
Knowledge does give us power to feel better about ourselves and to pursue our
interests. It also can give us the ability to affect someone else’s life in a
positive way.
The Challenge
Here is the challenge. Share your new knowledge with at least one
other person. Ask them how they learn best, and find a way to communicate your
new knowledge with them using that medium.
As each of us continues to take opportunities to learn, we
can help one another to achieve a greater quality of life.
Go, learn, and share!
Author’s Biography
Shari Gilford, from Oregon, has had kidney disease since 1977. She
has had two transplants which kept her off dialysis a total of 19 years. She now
does nocturnal home hemodialysis and awaits another transplant. In New York
State she pioneered a newsletter for her local clinic and was also trained as a
dialysis technician. She regularly works out at the gym and loves to hike in the
woods with her husband.
Blood Count Levels
at Risk
Did you know that governmental policies affect your hemoglobin and hematocrit
levels? The Centers for Medicare & Medicaid Services (CMS) have a policy called
the Hematocrit Measurement Audit that outlines how dialysis centers are paid for
the erythropoietin (also known as EPO, Epoetin alfa, or EPOGEN®) you receive.
Under the current policy, dialysis centers typically
receive payment for all of the EPO that is given. That may change in 2005.
A proposed revision to this policy has recently been
released by CMS. This policy change is part of CMS’s attempt to make sure that
the amount of money that the government spends to provide care to patients with
chronic kidney disease does not increase.
Under this proposed policy, the government will ask
dialysis centers to provide documentation that defends the use of EPO whenever
CMS believes that your hematocrit and hemoglobin levels, or the dose of EPO you
are receiving, is too high.
Renal Community’s Concern
Many people are concerned that if this draft policy goes into effect,
it may mean that dialysis centers will start changing the way they give EPO to
make sure that they do not lose money. The effect could be a change in the way
that anemia is managed, and your hemoglobin and hematocrit levels could decrease
or be less stable.
To help protect patients’ rights, weKAN and many other
organizations have sent a series of letters to CMS and Congress to voice our
concern over the proposed policy change. We will continue to monitor this issue
to make sure that the patient’s voice is heard and that changes in governmental
policies do not result in an unintended decrease in the quality of our care.
Why do we need erythropoietin (EPO)?
Patients with chronic kidney disease, especially dialysis patients,
are unable to make enough red blood cells, so we commonly receive EPO to help
increase hemoglobin and hematocrit levels. Each person needs a different
prescribed dosage to keep their blood count within a normal range. Clinical
studies have shown that dialysis patients with higher hemoglobin levels have
better outcomes and more energy compared with individuals who have lower levels.
