Winter 2006

The Birth of Renal Support Network
by Lori Hartwell, weKAN President

I can remember the exact moment I came up with the idea of starting the Renal Support Network. I was in my car, waiting for a red light on Sunset Blvd. in Hollywood, by the Kodak Theater, where the Academy Awards take place.

The gridlock was horrible that day, but when you are stuck in Los Angeles traffic you have lots of time to think. (Cell phones were not yet mainstream!) It was the two-year anniversary of my kidney transplant; I was so grateful to not have to dialyze anymore. I had been on dialysis for 12 years and this was such a welcome change.

I suddenly found myself wanting to help fellow patients connect with their peers—to have the opportunity to share their experiences, strengths, and hopes with one another. After all, one friend can make the difference! Thus was born the idea of the Renal Support Network, on April 28, 1992.
When I got home I started writing a letter requesting support for my very first project, the Renal Support Network Directory, which lists the names and phone numbers of kidney patients who wish to talk with other patients. The Directory, which largely serves the Southern California region, continues to grow in scope.

Time flies by so fast! It’s hard to believe that RSN just wrapped up its 7th Annual Renal Teen Prom, a star-studded event that saw young renal patients traveling from as far as Arizona, Washington State, and New Jersey to attend. We’re in the process of producing our 9th RSN Directory, and we’ve grown to now boast a dedicated base of volunteers located across the country. This October we will be hosting our 3rd Annual National Patient Meeting—“Health, Happiness & Hope”—in Philadelphia.
RSN’s weKAN (Wellness & Education Kidney Advocacy Network) program has taken root. We have dedicated weKAN “patient activists” in more than 20 states working to help fellow patients attain the best care possible, and we now have this awesome newsletter that you’re reading. Our latest program, PEPP (Patients Educating Patients & Professionals), comprises a series of educational programs to be led by patient-speakers from across the country.

We’ve accomplished a lot in a relatively short time, and we’ve seen tangible proof along the way of the importance of patients reaching out to support their peers. Kidney disease is simply too demanding when you don’t have hope!

If someday you have an idea to help make your community a better place, write it down and act upon it. Many famous people will be receiving the coveted Oscar this year, but nothing matches the feeling of being able to use your own life experience to help others. If you have an idea to help your community, nurture it and let it grow. There’s no telling where it might take you.

Chronically Yours,
Lori Hartwell
President and Founder of Renal Support Network

The Buttonhole Method for Fistulas
by Zbylut J. Twardowski, MD, PhD, FACP
 
The buttonhole method is a technique that can be used when inserting needles into (cannulating) a fistula for hemodialysis treatments. It involves inserting the needles in the same spot each time.

Over time, small tunnels of scar tissue develop that make the needle insertion easier, faster, and painless, similar to what happens in a pierced ear. Bad needle-sticks are virtually eliminated, and bruises (hematomas) are reduced more than 10-fold.

Conventional wisdom has been to change the site of puncture for each dialysis treatment. Ongoing experience, however, indicates that insertion of the needles in exactly the same spot (only in fistulas, not grafts) assures fewer complications.

Interestingly, the method was discovered by chance in a patient who had very few places left for needle insertion. After a short while, the patient praised the method as being painless, so it was decided to try it with others.
 
Technique Details

The break-in period. After a fistula has been created and allowed to “mature,” it should be punctured by the same experienced “sticker,” using sharp needles, until the best needle insertion site is determined.

Routine use. Once the tunnel of scar tissue, or “track,” is established (after about 8 to 12 cannulations), blunt needles should be used, and other people can then insert the needles. The advantage of a blunt needle is that it tends to pass through the established path without cutting adjacent tissue.

Puncture direction. Both needles should be inserted toward the direction of blood flow in order to decrease bleeding following needle removal.

Disinfection. Prior to needle insertion, the puncture area should be disinfected and the scab removed. The area then should be disinfected again and the needles inserted.
The buttonhole method is particularly useful for self-cannulation, either in the dialysis center or at home, or when a home patient has a partner to help with the needle insertion. This method has been used in Europe for more than 25 years and has also gained popularity in the U.S. in recent years, particularly with the more widespread use of blunt needles.

Some dialysis patients have been using this technique for more than 20 years on the same fistula. Check with your nephrologist to determine if it would work with your access. 
 
Author’s Biography
Dr. Zbylut J. Twardowski, Professor Emeritus of Medicine, University of Missouri, Columbia, is a co-inventor of the buttonhole cannulation technique. He holds 22 patents for dialysis-related inventions and is a recipient of the American Kidney Fund’s Torchbearer Award, the International Society for Hemodialysis’ Trailblazer Award, and numerous other honors.

Four Things That Matter Most
by Dawn Dungan, weKAN Patient Activist

Not long ago, I heard a powerful song. In it, a man shares with his friend some insights about living that he learned while facing death. Paraphrased, he learned to love deeper, speak sweeter, and give the forgiveness he had been denying others. He expressed his hope that his friend would learn to live these truths while he still had life.

I have lived with chronic disease for many years. I have experienced a heart attack at 28, short-term blindness, kidney failure (along with dialysis and transplantation), as well as a few life-and-death situations along the way. I survived these very difficult times, and I not only learned to rely on God more, but I also learned much about living.

Some of the lessons I learned came from a book written by Dr. Ira Byock. He writes in his book—The Four Things That Matter Most—about the lessons his terminally ill patients have taught him. The four straightforward truths that Dr. Byock wrote about are profound, powerful, and life changing. I quickly determined that they would always be a part of my life. They are: “Please forgive me,” “I forgive you,” “Thank you,” and “I love you.”

Please Forgive Me
The first thing that matters most is saying, “Please forgive me.” This simple phrase is only three words long, yet it has the ability to break down walls, melt hardened hearts, and repair broken relationships. It is also one of the most important requests we can make to someone we’ve hurt, whether that hurt was intentional or not.

I gave a copy of The Four Things That Matter Most to a physician-friend of mine. When I first saw him I was an angry, out-of-control diabetic who didn’t want to do the work required to manage my disease. During my third visit, he threw my chart down on the table and bluntly told me that I was wasting both his time as well as my own. He was right.
On the inside front cover of the book, the first thing I wrote was, “Please forgive me for having wasted your time so long ago.”

I Forgive You
The second thing that matters most is saying, “I forgive you.” How easy this sounds, but how difficult it is to say. We selfishly hold on to forgiveness instead of giving it away. When you learn not to take life for granted, you realize how valuable forgiveness is. Forgiveness can change someone’s life. There is nothing more freeing than the feeling of forgiveness, both when given and when received.

The second thing I wrote to my physician-friend was, “I forgive you for speaking to me so bluntly that day when you said I was wasting your time.”

Thank You
The third thing that matters most is saying, “Thank you.” How simple to say these two words, yet how often do we say them? Not nearly enough. Thank you for helping me. Thank you for listening. Thank you for loving me.

To thank my physician-friend, I wrote, “Thank you for speaking to me so bluntly that day when you said I was wasting your time. Thank you for allowing me the privilege of being your patient.”

I Love You
The fourth thing that matters most is saying, “I love you.” We assume the people in our lives know how we feel about them—that we do love them. It is something we often take for granted in our relationships. The words “I love you” have great power.

To my friend I wrote, “I love you. You helped me save my life.”

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.

From Rock Star to Kidney Patient to Cartoonist
by David Jackson

Cartoonist
When Peter Quaife began drawing dialysis-related cartoons as a way to pass the time while at his dialysis clinic, he had no idea he was creating a sensation. But then again, creating sensations is nothing new to Peter. He and some friends created a musical sensation some 35 years earlier when they formed the popular British rock group “The Kinks.”

“Drawing cartoons was really just something to do because I got bored doing crossword puzzles and watching TV all the time,” said Peter. Although he began to draw purely for his own amusement—depicting the trials and tribulations to which all dialysis patients and staff can relate—one of Peter’s nurses was simply knocked out when she saw what he was doing.

“I was really impressed with the quality and the uniqueness of the drawings, but more importantly with the content,” says Deborah Young of the Belleville Dialysis Clinic, which is located near Toronto, Ontario, Canada. “The cartoons so humorously summed up everything that happened at the clinic—both funny and not so funny. Peter really has a flair for humor and observation.”

In early 2004, Deborah urged Peter to let her assemble his cartoons in a photo album so that all of the clinic’s patients and staff could enjoy them. “Everyone really got a kick out of the album,” says Deborah, “and I think the reaction encouraged Peter to continue drawing. We all felt that the cartoons should be seen by a larger audience.”

The result was The Lighter Side of Dialysis (Volume 1), a collection of poignant cartoons that can best be appreciated by those who know dialysis best—the patients, their family members, and renal healthcare professionals.

Rock Star
In 1964, when Peter was just 19 years old, he and three friends from his North London suburb became international stars nearly overnight as “The Kinks.” Their smash single You Really Got Me raced to the top of the British pop charts, smack dab in the middle of Beatlemania.

“It was very exciting and a lot of fun in those early days,” says Peter. “We were just four ordinary kids one day, and the next thing we knew we were the second biggest group in the world!” The Kinks continued to make the Top 10 frequently throughout the 1960s, and they soldiered on until 1996. But having grown tired of the rock & roll lifestyle, Peter left the Kinks in 1969 to pursue other artistic endeavors, including painting and writing.

Peter moved to Ontario, Canada, in 1981, living a quiet life and indulging in hobbies such as drawing political cartoons for local newspapers. In 1998, he was diagnosed with kidney failure and has been a dialysis patient/cartoonist ever since.

“I like to look on the bright side of things,” says Peter of his cartoons. “You take the hand you’re dealt and you make the best of it. It’s really up to you.”

Get the Book!
The Lighter Side of Dialysis (Volume 1), published by Jazz Communications, was originally released only in Canada. But due to the enthusiastic response, the book can now be obtained by visiting www.lightersideofdialysis.com or by calling (866) 239-3279.
As a result of the success of the first volume, Jazz Communications released The Lighter Side of Dialysis (Volume 2) in Canada in November 2005. No doubt, Peter Quaife will soon have himself another hit!

Author’s Biography
David Jackson is a freelance writer based in Toronto, Ontario, Canada.

March is National Kidney Month: Are Your Friends or Family at Risk for Kidney Disease?
by Virna Elly, weKAN Patient Activist

In order to promote National Kidney Month, RSN is proud to offer important advice about kidney disease prevention that you can pass along to your friends and loved ones, especially those who have high blood pressure or diabetes.

Did you know that an estimated 20 million Americans are in the early stages of kidney disease, and that another 20 million—primarily those with high blood pressure or diabetes—are at risk!? The worst part is that most people in the early stages have yet to be diagnosed! This is because the symptoms of kidney disease are not apparent until the kidneys are about to fail. The best way to diagnose early kidney disease is by undergoing simple, widely available blood and urine tests.

Questions to Ponder
Ask your friends or loved ones to answer “yes” or “no” to the following questions:

• Do you have diabetes?

• Do you have high blood pressure?

• Does anyone in your family have kidney failure?

If they answer “yes” to ANY of these questions, they may be at risk for kidney disease and should talk to their healthcare professional about being tested.

Even if your friends or loved ones answer “no” to the above questions, you might want to pass along the following list of problems commonly associated with kidney disease; it just might encourage them to get tested.

If they answer “yes” to ANY of these questions, they may be at risk for kidney disease and should talk to their healthcare professional about being tested.

Even if your friends or loved ones answer “no” to the above questions, you might want to pass along the list of problems commonly associated with kidney disease (below); it just might encourage them to get tested.

Free Testing!
Free health screenings for kidney disease are available through the National Kidney Foundation’s “Kidney Early Evaluation Program” (KEEP) and through the American Kidney Fund’s “Minority Intervention and Kidney Education” (MIKE) program. To find out more, contact:

National Kidney Foundation
(800) 622-9010
www.KEEPonline.org

American Kidney Fund
(800) 638-8299
www.kidneyfund.org


SIGNS & SYMPTOMS OF KIDNEY DISEASE
• swelling or numbness in feet, ankles, or hands (edema)
• changes in urination (frequency, color)
• increased fatigue and lack of energy
• difficulty concentrating, confusion
• headaches
• itchy skin
• muscle twitching, especially in legs
• loss of appetite
• metallic taste in the mouth
• nausea and/or vomiting
• insomnia
• changes in skin color (yellowish tint)
• fragile bones

Important Note
The signs and symptoms listed above may be due to other factors. See your healthcare provider for an accurate diagnosis. If you or someone you know exhibits these symptoms, it is important to get tested for kidney disease promptly.

Author’s Biography
Virna Elly, from Northern Virginia, lives a full and meaningful life despite the challenges of coping with numerous chronic illnesses. In August 2005 she received a successful kidney-pancreas transplant. Virna currently works as a patient advocate, author, patient educator, and speaker on kidney, diabetes, and organ transplantation & donation issues.

PEPP Program Launched

RSN is excited to announce that it has chosen those patients who will take part in its latest program, Patients Educating Patients & Professionals (PEPP).

This select group of patient-speakers underwent intensive training in January, coordinated by RSN, to prepare them to speak before gatherings of renal patients and healthcare professionals. This comprehensive training provided them with the knowledge, skills, and materials to deliver the following presentations:

• Your Achy Breaky Heart: What you need to know about secondary hyperparathyroidism
• Energize Yourself: What you need to know about anemia
• Promoting Patient Participation in the Dialysis Setting

RSN’s best-case scenario came to pass, and the response received was overwhelming. Choosing the PEPP speakers from among the many applicants proved to be a daunting task. The selection process involved a panel of patients, communication specialists, and members of the RSN Advisory Board who ranked each applicant on potential or proven public speaking ability, as well as on the applicant’s history with kidney disease and on his/her personal story. Those chosen represent the gamut of renal replacement therapies as well as a cross-section of the country.

PEPP, which is sponsored by an educational grant from Amgen, is built on the cornerstone of patients becoming more adherent and more self-sufficient once they see other patients achieving their goals and dreams in spite of kidney disease. PEPP also provides tips for healthcare professionals to help patients adhere to their care plan. PEPP speakers will be models of hope to the renal patients and professionals they encounter during their speaking engagements.

If you know of an upcoming patient or healthcare professional meeting that could benefit from having a PEPP speaker on its program, please contact RSN at (818) 543-0896, or info@RSNhope.org.

For more information and to see a promotional video, visit RSNhope.org.
We’re adding PEPP to the kidney community!
 

Take Charge and Lengthen Your Life
by William “Bill” Dant, weKAN Patient Activist

Are you aware that some patients live and enjoy life for 10, 20, even 30 years and longer while on hemodialysis? One of my good friends has been on hemodialysis for 33 years! On the other hand, far too many patients develop problems that curtail long life.
What makes the difference?

Many patients will experience either an access infection or access failure while on hemodialysis. However, this can largely be prevented if you choose to take charge of your access and its care.

I want to tell you four things I learned to do involving the care of my access that helped me stay healthy for over 17 years of dialysis. My access lasted all those years without a single infection. If you do these things, your access will give you a long, healthful life.

1. Get a fistula.
First, you need the best access. If possible, insist on getting a fistula! NOTE: If you have a graft, you may still be able to get a fistula. Consult with your nephrologist or vascular surgeon.

If you have a temporary neck or chest catheter, it may work fairly well, but patients with a catheter experience an average of 2 infections each year. The tip of a catheter sits inside the heart, so a catheter infection can infect the heart without much in the way of any early symptoms. Catheter infections can also be hard to cure.

If, because of medical complications, you absolutely need a permanent catheter, you should insist that sterile technique is used when you are beginning and ending dialysis, as well as during dressing changes. And always be sure it is covered and clean to reduce your chance of infection.

Except for a few patients who have grafts, the patients I know whose access has worked for a long time have fistulas. If you can get a fistula, it is one way to help ensure that you will live a longer life with fewer access-related problems.

2. Avoid Infection.
As you have probably been told, your access arm needs to be kept clean, and your sites carefully prepped before needle insertion. It is also good practice to wash your arm with antibacterial soap before your treatment. Be sure your needles are kept in their protective sheaths until they are ready to be inserted.
Also, at the end of treatment, after your sites have stopped bleeding, put a drop of betadyne or equivalent over the puncture hole before bandaging.
If your access arm is red or irritated, this could be a sign of infection. Report it immediately!

3. Self-stick.
Why would you stick yourself when someone else can do it? For almost everyone who hasn’t tried it, the idea of self-sticking is scary.
But think about it. You actually know more than anybody else about how your own fistula or graft feels and acts. Since no one else has that knowledge, no one else can stick as well as you.
After you have inserted your own needles for about a month, you won’t want anyone else with a needle ever to get near your arm again. Self-sticking means less pain, and properly done, almost eliminates blown sticks and the need for re-sticks. This means you will have a fistula that is like the “Energizer bunny”—it keeps on going and going and going.

4. Feel your access regularly.
One day you will check your fistula or graft and the thrill or pulse will be gone because it has clotted off (mine clotted after 12 years). What to do? Very few patients know the correct answer: get it de-clotted… quickly! Not tomorrow, not after a doctor visit, but right away. The most skilled nephrologist I know feels de-clotting should be done within 12 hours to have the best chance of saving the access.

This means you need to talk now with your nephrologist and with your unit, and find out where you can go that has either an interventional radiologist or a vascular surgeon on call 24/7. That knowledge will allow you, when you do find your access clotted, to be on your way to save it before it is too late.

As you do each of these things, you take more and more control of your treatment and your health. The more you are in control, the more empowered, happy, and confident you will feel. That is the way your dialysis experience should be.

Author’s Biography
William Dant dialyzed from 1977 through 1994, when he received a deceased donor kidney. His fistula lasted all of his time on dialysis, during which time he had no access infections and no overnight hospital stays. Bill is a weKAN patient activist, an active member in his regional ESRD Network, and a member of the American Association of Kidney Patients.

Take Care of Your Access
 Check the thrill or pulse in your access daily
 Have your nurse or technician check your access before each treatment
 Do not use a blood pressure cuff on your access arm
 Do not wear a watch or jewelry on that arm
 Do not sleep with the access arm under your head or body
 Avoid lifting heavy objects or putting pressure on that arm

Way to Go, Bill Peckham!
by Sharon Pahlka, weKAN Patient Activist

Congratulations to weKAN patient activist Bill Peckham, who will be receiving the Clyde Shields Distinguished Service Award, the highest honor for volunteers bestowed by the Northwest Kidney Centers (NKC), Seattle, WA.

The award is named in tribute of the courageous Clyde Shields, who was the first long-term dialysis patient in the world, living for 10 years after beginning dialysis in 1960.
The Clyde Shields Award is given annually to any non-physician who has made a significant contribution to the welfare of kidney patients. Bill, a dialysis patient for over 15 years, has served on the NKC Board of Trustees since 1998, and was influential in making the NKC’s first-ever Family Health & Kidney Expo, held last October, a huge success.

As someone who leads by example, Bill is very active within the renal community, modeling excellence, service, teamwork, stewardship, and integrity. He also is a pioneering dialysis patient, being the first user of the PHD® short, daily hemodialysis machine, manufactured by Aksys.

Bill has traveled to Washington, DC, on many occasions advocating for kidney patients. He also is a world traveler, having visited—and dialyzed—in more than 20 countries on five continents.

Bill is an amazing role model, more powerful than a truckload of books on kidney disease! He truly makes a difference in the lives of those who meet him. We all agree that Bill Peckham certainly has earned the Clyde Shields Award. Well done, Bill!

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.