Past Issues
Fall 2005
2nd Annual National Patient
Conference: Education Plus Friends Equals “Health, Happiness & Hope”
by Malia Langen, weKAN Patient Activist
The Renal Support Network (RSN) enjoyed spectacular autumn weather in Chicago
when the famously “Windy City” welcomed close to 100 attendees for the 2nd
Annual RSN National Patient Meeting, held at the Sheraton Hotel and Towers. For
the second consecutive year, RSN’s meeting was held in conjunction with the
annual conference of the National Renal Administrators Association (NRAA).
The meeting, titled “Health, Happiness & Hope,” took place
over three days, September 29 through October 1, 2005. Patients and
professionals alike become more informed on matters relating to kidney disease,
while getting to know one another and sharing their common experience.
Participants listened to speakers and panel discussions on
a variety of topics. These ranged from medical awareness issues such as heart
disease and new trends in transplantation, to personal growth topics such as
keys to living successfully on dialysis and keeping a positive attitude. Some of
the presenters spoke from their own experience as patients. “Health, Happiness &
Hope” attendees came to Illinois from all parts of the United States, including
California, Hawaii, New York, Washington and Arkansas, along with a strong
contingent from the Midwest.
The weekend was full of opportunities to share information
outside of the formal presentations and discussions. Special breaks, meals, and
social events were planned to entertain and allow patients and professionals to
talk with one another in a smaller setting. On Saturday night attendees enjoyed
a dinner and magic show performed by Jamie Gilbert, otherwise known as Jamie-G,
who had driven to Chicago from Canada after his dialysis treatment in order to
entertain fellow patients. His performance was both fun and inspiring.
In a way, that is also how the entire weekend could be
summarized – the sharing of information between patients and professionals in a
fun and inspiring forum.
If you did not get a chance to attend the 2nd Annual RSN National Patient
Meeting, we hope you will join us next year in Philadelphia, Pennsylvania,
October 4 – 7, 2006.
Author’s Biography
Malia Langen was diagnosed with kidney failure at age 13 and spent
her teen years on dialysis. A kidney donated by her mother has kept her healthy
for the past nine years. She enjoys helping young patients learn how to maintain
life outside of the medical realm.
Quotes from Meeting Participants
Sharon Pahlka, Washington
I enjoyed every minute of the National Patient Meeting. I learned something from
all the speakers, but one session that I especially enjoyed was by Gail Wick,
RN: “Leadership Pearls for Your Personal and Professional Lives”. She started by
saying: “Every one of us is a leader at life. Beware of the example you set for
others to follow, for you will be followed.” It was great!
Roanne Faith Dale, Utah
Even though I have been on dialysis for decades, I learned so many new things at
the wonderful RSN Patient Meeting, while also having fun! Jim and I were
fascinated by all the speakers who had such great information for us. Above all,
I was touched by the incredible people there -- those with a passion for life
who care about others. Thanks to all of you.
Bonita Balkcom Guilford, Georgia
Words will never express my gratitude for the work of so few, which will affect
so many.
Malia Langen, California
It is always uplifting to be around other inspiring and motivated patients. That
was my main reason for making the trip to Chicago, and the patients and
professionals I met at the national meeting exceeded my expectations. It
reminded me once again that although we all have differing backgrounds and are
unique individuals, we all share a similar story and a united goal to support
one another and thrive in the face of kidney disease.
Heather Powell, Arkansas
I encourage every patient to go to a “Health, Happiness & Hope” conference if
you have the chance. You will learn valuable information presented by
professionals that are also patients, who have a first-hand knowledge of their
topic. It is an experience you will not soon forget. I am already looking
forward to next year!
Mike Harrera, California
My most memorable moments were with the magicians: Jamie and his two associates.
Jamie gave Mrs. Moody of Chicago and me a clever trick I’ll never forget while
we waited for her ride. It was wonderful to meet everyone and be inspired by
their stories. I was reassured by the doctors, and all who helped me by sharing
their stories, expertise, and encouragement.
Fight Procrastination: Do It NOW!
by Sharon Pahlka
I procrastinate. Do you?
Let’s stop.
Dreading something often takes more energy than doing it. There is a basic
reason why most people don’t accomplish what they could: They just can’t get
started. Why?
1. The task is difficult and/or overwhelming.
2. It is time-consuming.
3. We may lack knowledge or skills.
4. Fears.
Coaching Question
What will you do to eliminate procrastination?
Simple Cure
- Focus on getting started and developing momentum, not
on finishing everything (perfectly).
- If the problem is lack of knowledge or skill, make a
plan for getting more.
Make a list of the benefits of not procrastinating.
- Identify your own goals, strengths, values, and
priorities, and work within those.
- Compare your actions with the values you feel you
have. Are your values consistent with your actions?
- Discipline yourself to use time wisely: Set
priorities. (Remember, it’s not procrastination if it wasn’t worth doing in
the first place.)
- Use the “inchworm technique.” Look at a project and
break it into small chunks and work on the little pieces. Reward yourself
after you complete a task, however small.
- Motivate yourself: Dwell on success, not on failure.
Tell yourself: “This isn’t so hard, it won’t take long, or I can easily do
some part of it, or I’ll learn while doing.”
- Picture in your mind what you would like to achieve.
When you have that clearly in mind, then begin somewhere—anywhere—trying to
achieve some of your vision.
Coaching Tip
Overcoming procrastination produces peace of mind, a feeling of being
in charge of your life. You will experience increased personal freedom, so start
working on procrastination today.
Homework
Make a list of five top procrastinations. Work on one each week. Pick
a new one when you have that one done.
Resources:
Burka, Jane B., and Yuen, Lenora M. Procrastination. Reading, PA:
Addison-Wesley, 1983.
Ellis, Albert, and Knaus, William J. Overcoming Procrastination. New York:
Signet Books, 1977.
Quotes
Procrastination is the thief of time.
–Anon
And if not now, when?
–Talmud
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. Check out her website at
www.lifeisagift.com.
Holiday Dining Tips
By Jennifer Castillo, weKAN Patient Activist
Holiday Meals in Someone Else’s Home
The best piece of advice when invited to someone’s home for the
holidays is to do your homework and plan ahead with regard to what you can eat.
If you are invited to the home of a family member or
friend, you can talk to the cook about the menu ahead of time. You may not be
the only person with special eating concerns. The cook really wants the entire
meal to turn out perfectly for all the guests, so is usually more than willing
to work with you to come up with an enjoyable and appropriate menu.
By speaking to the cook ahead of time, you may be able to
bring your favorite dish with you or suggest some menu items that you know would
fit into your diet and that others would enjoy as well.
Holiday Meals at a Restaurant
Once again, planning ahead can work in your favor. Find out what
restaurants are in the area you will be traveling to. Often, you can call the
restaurant ahead of time to learn more about their holiday dinner menu choices.
You then have the option to ask the restaurant what possibilities there are for
substitutions due to your dietary needs.
You could even ask if it would be okay to bring a special
dish or drink to the restaurant to complement the meal because of a family
member’s dietary constraints.
An option for dessert may be to head back to your host’s
home instead of having dessert out. Once again, suggest desserts that would work
well with your renal diet and that won’t leave you feeling like you’ve missed
something.
For me, whether I am traveling for the holidays or
entertaining at home, I still practice moderation. No one wants to be rushed to
a medical facility due to over-indulging at a holiday meal, especially when away
from home.
If you know your renal diet well, you can more easily
choose foods that are safe to eat, or practice moderation if you choose
restricted foods. Make life simple. Plan ahead so that you have a successful and
enjoyable holiday season.
Author’s Biography
Jennifer Castillo has lived with kidney disease since 1979. She is
involved in various kidney patient organizations, and is also a member of the
Editorial Advisory Board for Nephrology News & Issues. She always aims to be as
proactive and self-motivated in her care as possible, and has worked and
attended school during her many years on dialysis.
Potassium in a Typical Holiday Menu (just one
plateful!)
Roast Turkey - 3.5 oz. 290
Bread Stuffing - ½ cup 90
Mashed Potatoes - ½ cup 300
Gravy - 2 oz. 90
Sweet Potato Casserole - ½ cup 300
Winter Squash - ½ cup 350
Cranberry Sauce - ½ cup 40
Cranberry Orange Relish - ½ cup 50
Green Beans, Carrots, or Creamed Onions - ½ cup 150
Cabbage - ½ cup 75
Pumpkin Bread - 1 slice 60
Pumpkin Pie - 1 slice 250
Whipped Cream - spoonful 15
Apple Cider - 4 oz. 150
Gingerbread cookies - 6 300
TOTAL (mg): 2510
OTHER COMMON ITEMS
Apple Pie - 1 slice 120
Mincemeat Pie - 1 slice 330
Pecan Pie - 1 slice 150
Ice Cream - ½ cup 150
Fruitcake - 1 small piece 250
Avoid anything with molasses. One tablespoon molasses = 300 mg potassium.
Potassium amounts are an approximation. Total potassium per food item derived
from Bowes & Church’s Food Values of Portions Commonly Used, 17th edition, Jean
A.T. Pennington (Ed.).
©1998 by Lippincott-Raven Publishers.
Important Reminder About Potassium
If your potassium level becomes too high, your heart could stop
beating. This would be due to an electrolyte imbalance, not a mechanical
failure, which means that it could not be shocked into starting again. In other
words, it has stopped forever. Therefore, staying away from an overload of
potassium is critical!
Make the
Most of Your Doctor Visit
by Bill Price, Ph.D., MSW, LICSW
I was diagnosed with irreversible acute renal failure on November 29, 1995, and
started hemodialysis two days later. The diagnosis dealt a devastating blow to
my psyche. My work, my hopes, and my ambitions suddenly were put on hold.
I had worked very hard toward achieving my Ph.D. in Social Work and received a
series of promotions. I was on a fast career track. I felt confident and my life
was full of meaning. Now I had to step back and take a life-assessment inventory
of what this diagnosis meant for me and my future. I had to transfer all of my
inquiry and research skills to learning more about my condition, dialysis, and
strategies for coping.
My emotions were on a roller coaster. They twisted,
turned, and vacillated among the various stages of grief: denial, anger, blame,
bargaining (“God heal me and I will be a better person!”), depression, and
finally, acceptance. I had to stretch myself in order to wrap my mind around
what was really happening to me, both emotionally and physically.
With a great deal of prayer and meditation, I accepted the
reality of my condition and the fact that it was not going to go away. Only then
was I able to reflect and take a proactive role in my treatment and care. I
began searching for answers through reading and by asking questions of my doctor
and medical team, and thus received the information I needed to make informed
decisions about my healthcare.
I have been on this journey now for nearly 10 years. From
what I have learned, I recommend that anyone with a life-threatening health
condition develop a collaborative partnership with his or her doctor and medical
team. Let your doctor know that you want the best of care along with honest
communication, and that you don’t want information withheld to “protect” you
from the bad news.
Ask clear questions about your care. Between appointments, I would jot down
questions as they came to mind. The night before my appointment, I would type
out the questions I wanted the doctor to answer. When I got to the appointment,
I would hand the list of questions to my doctor and tell him I would like them
answered at the end of the examination.
I had access to the University of Minnesota Bio-Medical
Library and I would go there to read and make copies of journal articles so I
could discuss what I had learned with my doctor. Frequently, I would give the
doctor a copy of these articles for his files. I believe that the proactive
approach I took toward learning about my condition and needs assured my doctor
that I was a serious and active participant in my healthcare.
While you may not follow the exact recommendations I have
made about communicating with your doctor, I hope they will encourage you to
take an active role in your healthcare treatment as well.
Author’s Biography
Bill Price is a retired school principal and independent clinical
social worker. He lives in Minnesota, where he is active as a volunteer in
church, community, and kidney-related activities. In September 2000, he received
a kidney transplant. After two years it rejected, and he now receives
hemodialysis three times a week while awaiting a second transplant.
“Music, Music, Music”
Theme of Upcoming Renal Teen Prom
For the seventh consecutive year, the Renal Support Network will be hosting a
special prom for teenagers and young adults, ages 14 to 21, who have kidney
disease. As in previous years, the Renal Teen Prom--to be held January 15, 2006
in the Los Angeles area--will be co-hosted by student and alumni volunteers from
Notre Dame High School in Sherman Oaks, California.
Set in the style of a senior prom, this free event draws
more than 300 “kidney teens,” their guests, and volunteers from throughout
Southern California.
Last year’s gala attracted kidney teens from Arizona and Texas, and teens from
Canada will be coming to this year’s event, a testament to the prom’s growing
reputation.
With “Music, Music, Music” as the theme of the 2006 Renal
Teen Prom, the teens will be treated to a night of dancing, karaoke, dinner
(renal-friendly), limousine rides, and glamour “photo opts.” Generous donations
of gowns will allow every young woman to look elegant, and appearances by
Hollywood celebrities will ensure a night to remember. Attendees will soon
discover that one friend can make a difference!
If you are a teen or young adult with kidney disease
(pre-dialysis, dialysis, or transplant), or you know someone who is, contact the
Renal Support Network for more information.
As spoken by Plato, “Music gives a soul to the universe,
wings to the mind, flight to the imagination, and life to everything.”
Planning for an
Emergency: Tips for Kidney Patients
by Heather Powell, weKAN Patient Activist
In a natural disaster, planning ahead could mean the difference between life and
death for a kidney patient. Dialysis patients are especially at risk. You may
have to miss one or more treatments, or you may not be able to dialyze at your
usual clinic. Utilities may be down. Emergency rooms may be overburdened and
short-staffed. Have a plan in place so you know exactly how, when, where, and
what you are going to do. Here are a few tips to help get you started.
1. Keep the following information with you at all times:
2.
Keep your Medicare number and medical insurance information with you.
3. Obtain a medical ID tag. This contains vital information about your medical
condition and treatment, and alerts medical personnel to your special needs.
4. Ask a friend or relative in another area to be your designated contact
person. In an emergency, you may not be able to make telephone calls within your
immediate area, but may still be able to place calls to another area.
5. Stay home. If your house is not damaged and you are in no danger, this is the
best place for you to be. You can always contact the police or emergency medical
services if you need assistance.
6. Check in with your dialysis unit (and/or your doctor) so that they know where
you are and to find out if the unit is operating. Know your unit’s emergency
plan. If you have concerns about the plan, address them with your doctor and/or
the clinic staff.
7. If your unit is not operating or if you are unable to reach the unit, you may
be able to dialyze at a different unit. Make sure you have the names, locations,
and phone numbers of back-up dialysis units and hospitals in your area. Many
dialysis chains have toll-free numbers to help patients locate units at which to
dialyze. Find out if your dialysis provider has a number to call and add it to
your list.
8. Keep the following emergency supplies in a secure place:
-
battery-powered AM/FM radio and extra batteries (learn where on your radio
dial to find the emergency broadcast radio station in your area, which will
give you up-to-date information on current conditions and other emergency
information even if you have no electricity or phone service)
-
flashlights with plenty of extra
batteries, or candles and matches (remember, do not light a match until you
have checked for natural gas leaks)
-
first aid kit
-
fire extinguisher
-
emergency phone list
9. Have an emergency plan with regard to
meals in case you have to miss a treatment. Staying within your fluid and
dietary restrictions is critical. Avoid foods high in potassium and sodium (see
note below). CMS’ booklet, “Preparing
for Emergencies: A Guide for People on Dialysis” has a detailed list you
might find helpful regarding emergency supplies and food.
10. Be aware of all aspects of your dialysis prescription (hemodialysis or
peritoneal dialysis). Your doctor or nurse can write out your prescription for
you.
Hemodialysis patients:
-
Keep an
updated copy of your treatment flow sheet
-
Know how often
and how long you dialyze
-
Know the basic
settings of your machine and what size dialyzer is used
-
Know how much
fluid you usually gain between treatments
-
Know what
medications you receive during dialysis and the dose of each
PD patients:
Important Reminder About Potassium
If your potassium level becomes too high, your heart could stop
beating. This would be due to an electrolyte imbalance, not a mechanical
failure, which means that it could not be shocked into starting again. In other
words, it has stopped forever. Therefore, staying away from an overload of
potassium is critical!
Additional Resources
Go to www.medicalert.org/E-Health to find out about Medic Alert’s new
E-HealthKEY, a self-contained USB-enabled tool that stores your medical
information and can be attached to your key ring.
CMS offers a free booklet called “Preparing
for Emergencies: A Guide for People on Dialysis.” Ask your dialysis unit for
a free copy, or call 1-800-MEDICARE to obtain one. Ask for CMS Pub. No. 10150.
Author’s Biography
Heather Powell celebrated one year with a transplant in October. 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 attributes all her successes in
life to God’s goodness and blessing.
Uncertainty
by Lori Hartwell, weKAN President
The last couple of months have brought so much uncertainty, pain, and grief to
people across the world. Hurricanes, floods, and earthquakes have caused many to
reconsider whether they can truly believe that things will ever get better.
Last December, I had to undergo double knee-replacement surgery. I really didn’t
have a choice, since it was becoming too difficult for me to walk without severe
pain. Thirty-seven years as a kidney patient had taken its toll, along with
years of ice-skating.
When I awoke from surgery, I was overcome with uncertainty, pain, and the
profound question, “What in the world just happened to me!?” I could not do
anything without help. I had no control.
The day after surgery, the hospital workers got me up to walk, but the pain was
unbearable. I felt like I would never be the same again. But if nothing else, my
years of experience in dealing with one health crisis after another have taught
me that “This too shall pass” and to take “One day at a time.”
With the love and support of my family and friends and the skilled abilities of
many healthcare professionals, I slowly improved. Walking around dependent upon
a walker for six weeks gave me a deeper understanding of patience, for I often
get impatient with myself when I think that life is moving faster than me.
Every other day for two months I had to go to physical therapy and undergo
painful massages in order to remove or break up the scar tissue left over from
the surgery. The hardest thing was making my legs stand straight (hyper-lock) so
that I could stand for more than a minute at a time. I had the opportunity to
talk with others who had gone through the same type of knee surgery. Hearing
their words of encouragement, stories of hope, and ways to speed along my
recovery helped me immensely.
The downtime surrounding my recovery gave me an opportunity to reflect on what I
really want out of life. I spent time reading, making arts and crafts, and
listening to music. Tapping into my creativity, which requires downtime to stir
up, made my recovery smoother and faster.
My goal has always been to help provide patients with a platform from which they
could help fellow patients by sharing with one another their experiences,
strengths, and hope. This has been accomplished through RSN’s Renal Teen Prom,
the RSN Directory, the weKAN newsletter Live & Give, and the RSN National
Patient Meeting “Health, Happiness & Hope.” It’s nice to see dreams come to
fruition in the form of new programs designed to help fellow patients.
RSN’s latest new program is called PEPP (Patients Educating Patients &
Professionals). PEPP comprises a series of educational programs to be led by
patient-speakers. Its goal is to improve the outcomes of people with chronic
kidney disease by increasing their knowledge of the disease, thereby encouraging
involvement and self-management in their own care.
I am happy to report that when I reached three months post-double
knee-replacement surgery, I was able to deliver a 45-minute presentation 3,000
miles from home. At six months post-surgery, my husband and I walked all over
Boston on a personal guided tour led by former governor Michael Dukakis. At nine
months post-surgery, I personally made 27 visits to congressional offices on
Capitol Hill over the course of only three days.
My new knees (I feel like the Bionic Woman!) are allowing me new freedom to walk
without pain. I don’t take for granted this feeling. Is this the silver lining
of adversity, that we don’t know what we have until we lose it?
It’s sometimes hard to make sense of pain and suffering. But we need to continue
to show up and participate to the best of our ability and take charge of our
most powerful ally, our mind.
Look at what you can do instead of what you cannot do. One of my favorite
sayings is, “When one door closes, another opens, but it is hell in the
hallway!” I have to thank my friends and family for pushing me through that
hall.
This holiday season, please be sure to give thanks to all the people who have
helped you. Reach out to a fellow patient and share your story... and listen to
his or her story. And most importantly, make a list of what you are grateful
for, and remember to hang onto hope!
Chronically Yours,
Lori Hartwell
President and Founder of Renal Support Network
