3rd Place Tie - A Brighter Day - 2002 Essay Contest
When I was younger, all I wanted was to live a normal life. To live a life without medicine, monthly hospital visits, and surgeries to save my life. I hated the fact that I was an outcast to the "normal" people. Some people would say that I was too different, and that I could never be like them. Others tried to give me a different point of view, a view that was as golden as a sunrise. These people are special people. They showed me that I should laugh. The negative people laugh because I am different, but I laugh because they're all the same.
When I was younger, I had a kidney transplant. My life changed drastically. From then on I would have to take medicine the rest of my life. I would have scars that I could do nothing about. This was not my choice; I did not want to live like this. I wanted to go out and play, to be free from worries of losing a vital organ easier than anybody else.
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A Conversation With A Nurse (Podcast)
Mary Houglum is the type of nurse that every dialysis patient would love to have. Her compassion and desire to be a nurse came from a night nurse she had in the hospital when she was 8 years old. This program will let you hear how she takes the time to listen to her patients to answer questions, resolve issues and explain treatments. Mary tells Lori and Stephen that it is important for the patient to be open and honest with their nurses.
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A Family Affair
The transplant doctor called a meeting for my whole family and told us that since I was AB positive, I was easy to match and they were all possible donors. So who would donate? The doctor helped us make a decision. My daughter was not the top choice because she might still have more children, so he suggested my oldest son, Robert, be tested and my other son, Michael, be the second choice.
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A Healing Presence: Howard Netter, MD
My father, Howard Netter, M.D., spent much of his life welcoming new people into this world. His work as an obstetrician-gynecologist perfectly melded his love for medicine with his absolute respect and joy for humanity. I recently returned to my hometown of Albany, New York to practice holistic medicine and energy healing. After speaking with streams of my father's precious patients I realized that this wonderful clinician and surgeon was, in fact, always practicing holistic medicine as well! He truly cared for every patient's mind, body, and spirit. He offered precisely what each patient needed to feel: supported, nurtured, and respected...When faced with deteriorating renal function and health challenges due to Polycystic Kidney Disease, he practiced what he believed: You must actively participate in your own health care process.
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A Nephrologist as a Cancer Patient Finds Enlightenment in a Support Group
Lessons learned about health and illness came not from an extremely busy nephrology practice, but, for me, from becoming a sarcoma (cancer) patient. It started in my thigh but metastasized to my lungs. After intensive chemotherapy and two major chest surgeries, I had a new respect for health, and realized that the experience of battling malignancy paralleled that of being a kidney patient. In fact, my dialysis and transplant patients were my source of inspiration, and still are.
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A Renal Rookie's Cooking Challenge
When I was asked to prepare a renal friendly meal for a friend on dialysis, I thought, "Sure, no problem. I cook healthy all the time. I just have to make sure to provide plenty of whole grain breads, wild rice, fruits, and plenty of water. Easy, right?" I couldn't have been more wrong.
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A Ride Across America 2: A Journey to Promote Organ Donation
In April 2006 (National Donate Life Month), we assembled a team of transplant recipients, living donors, and family members of donors and recipients and completed our second "Big Ride." After loading up our gear, we traveled from San Francisco to New York City on (take a guess...) ATVs!
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A Time to Speak
In case you're wondering, Toastmasters is not where you learn the fine art of making toast for breakfast (though a lot of clubs meet at that early hour). Rather, it's a training ground for learning the fine art of public speaking.
After visiting a few Toastmasters clubs in my local area, I decided this would be a beneficial investment of my time. I chose a club and became a member.
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Adapting to ESRD and Dialysis: Emotional Wellness is a Key to Renal Rehabilitation
While people with ESRD [end-stage renal disease] face many physical and emotional changes related to their disease and its treatments, strategies for coping do exist. The basis for successful adjustment includes two key elements: optimal clinical care to improve how patients feel, and rehabilitation management to improve their ability to function.
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Addiction and Kidney Disease (Podcast)
Drug and alcohol addiction is not a topic we hear much about in the kidney community. However, it is a very real issue for some people living with kidney disease and their families. Well discuss this topic head-on with Bobby Walker, a kidney patient who has walked this difficult and painful path. This is one story you must hear.
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Adequate or Optimal Dialysis (Podcast)
A frequent term that is used in the dialysis industry is adequate dialysis. Lori and Stephen talk to Dr. Raffi Minasian on how the industry is recognizing that patients need more dialysis to feel better and improve their quality of life. Dr. Minasian explains some of the benefits of more dialysis and the barriers health care professionals encounter to be able to deliver optimal dialysis to their patients
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Another 30 Years!
Once upon a time, a long, long time ago, before I'd ever heard the word nephrology, I paid no attention to my kidneys. I had just a vague idea of where they were located because I had big brothers. Every time they watched boxing, one or the other of them would yell, "Oh! Right in the kidneys!" when one guy hit the other on the back, sort of near the waist. My mother attempted to feed us kidney beans once or twice, but three voices chorusing the 1950's equivalent of "Uh, gross!" was enough to convince her they weren't that healthy for us. My father had a friend who'd moved up in the world and had a kidney shaped pool. Of course, I never had a bird's eye view of that as a child. So, we were a family pretty much ignorant about kidneys
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Are Fish Oil Supplements Right For You?
According to the American Heart Association (AHA), EPA (eicosapentaenoic acid) and DHA (docosahexaenoic acid), the "omega-3 fatty acids" found in fish, can reduce the risk of developing heart disease1. Fish oil supplements, which are about 30% omega-3 fatty acids, may be especially helpful for hemodialysis patients, especially those:
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Are We Ready to Bundle? (Podcast)
Bundling is a type of reimbursement policy that will affect kidney patients. Dr. Lazarus explains "The concept of bundling is to put more things into the payment." Government sees bundling as a way to control costs. Lori compares it to a buffet, "and we have to make sure we don't leave dessert out." Patients need to understand if bundling takes place, how it will affect them and their dialysis facility.
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Back on Dialysis Again? (Podcast)
Susie Gonzalez is in the process of her kidney transplant puttering out and will need dialysis again. Lori and Susie share their journey of how they are coping with losing a beloved kidney and some of the warning signs they encountered. They also share coping strategies and what you can do to delay the progression of kidney failure.
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Becoming a Living Donor
A few years ago, an in-law of mine was in rapidly declining health. He had been diabetic since his teen years, and now the diabetes was causing his kidneys to fail. He needed a transplant. For a variety of reasons, his blood relatives were not able to donate, so I volunteered. My friend Virginia Postrel had written about donating her kidney, and from her article I knew a couple of important things. First, although any major surgery involves risk, kidney donors usually fare quite well. Second, new surgical techniques have made things much easier for the donor.
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Bush Baby Travels the Globe - Learning about Love, Joy, and Support While Living with Kidney Failure
This is a story about a little stuffed koala bear-like animal that has traveled the globe to visit people with end-stage renal disease (ESRD), bringing them love, joy, and support from fellow travelers with kidney failure. The tiny toy creature, called "Bush Baby," has journeyed to five continents, staying with one enthusiastic host or hostess after another.
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Can You See Me Now? Waiting Room Tactics to Help Get You Noticed
You rushed to get ready and fought traffic all the way to the doctor's office. You barely made it in time for your appointment and then there you are, an hour later, and you still haven't seen your doctor.
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Caregivers - Who Loves Ya, Baby (Podcast)
This week Lori and Stephen visit with Lydia Weisman, licensed clinical social worker at South Valley Regional Dialysis Center, and Kay Goeden, caregiver to her husband Omer who is on dialysis, to talk about the importance of the caregivers in our lives. We throw our hats in the air to all of you who help us take care of ourselves! Listen with your favorite caregiver as we appreciate those who help us live healthier, happier lives. Taking care of loved ones can be a very difficult role. Sometimes we forget we’re all on the same side as we struggle through living with chronic illness. We'll discuss the issues those who take care of us have to deal with and offer tips for caregivers to take care of themselves.
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Cartooning Around (Podcast)
Join Stephen and Lori as they visit with Bob Klein, a successful film and voice-over actor and longtime kidney patient. Stephen and Lori talk with Bob about being an actor in Hollywood while living with kidney disease, how it affects self-image, and when and how to tell people you have kidney disease. (Bob also breaks into some of his voices.) Listen in!
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Coaching Yourself to Victory (Podcast)
On this week's show, Lori Hartwell and Stephen Furst speak with Sharon Pahlka, a truly remarkable woman who has been a kidney patient for three decades but has never let that stop her from doing the things she has wanted to do (even competitive water skiing, when she was a bit younger). She now helps others with chronic illnesses to "live their lives on purpose."
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Coming Full Circle
Because of the gifts I found deeply buried in the treasure chest of kidney failure, I will never, ever forget that I am to turn around and help those coming up behind me, so that they can turn around and help those coming up behind them, who can then turn around and help those coming up behind them.
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Commitment, Self-Evaluation, and the Value of Employment and Hope for Kidney Patients
Life as we have known it changes. That is why it is so critical to retain as much as possible the things that have given us purpose, identity, and financial reward. We need to keep working... at something!
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Confessions of a Fashion Princess (Podcast)
Michelle Kats (Mishy) hasn't had an easy life, she was diagnosed with kidney disease at a very young age. That hasn't kept her from developing style and knowing who she is. Listen as Stephen and Lori travel with her along her journey of courage, hope and love.
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Connecting with Fellow Patients
Times have changed and so has technology. When I was diagnosed with kidney disease 34 years ago, we merely had telephones, televisions, and radios. Today, we have a new way of communicating via cell phones, text messaging, e-mail, and the Internet. No matter which method of communication you prefer, connecting is a useful tool to help learn about ways to live successfully with kidney disease.
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Connecting With Your Physician (Podcast)
The ability to communicate with your physician will make a difference in your relationship and ultimately your care! Dr. Michael Lazarus, Medical Director for Fresenius Medical Care (FMC) returns to KidneyTalk to inform patients how to connect with their physician. He will also share what physicians need from patients to make the most of their office visit. Tune in and learn a few tips on how to communicate effectively with your physician.
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Cooking with Katie Lee Joel (Podcast)
This week's guest is Katie Lee Joel, wife of musician Billy Joel and host of TV’s "Top Chef" on the Bravo station. She is also a contributor to the 2006 edition of Kidney Friendly Comfort Foods: A Collection of Recipes for Eating Well with Chronic Kidney Disease. Katie Lee shares with Lori and Stephen why kidney disease is very personal her. It's because her grandfather experienced kidney failure. "When he was first diagnosed," says Katie Lee, "we were all very worried about dialysis and complications, but he was more concerned about what was on his dinner plate! So my grandmother and I went to work in the kitchen and adapted his favorite foods and came up with some recipes the whole family could enjoy."
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Creating a Successful Community Event (Podcast)
Bill Peckham, longtime kidney patient, and Joyce Jackson, CEO of the Northwest Kidney Centers, are this week’s guests on KidneyTalk. Tune in as Lori and Stephen discuss with Joyce and Bill the success of the Family Health & Kidney Expo held annually in Seattle, WA, and find out how you too can create an educational kidney event in your own community.
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Dating with Kidney Disease, and When Do You Tell? (Podcast)
Jenny is a young woman on peritoneal dialysis who has had two kidney transplants and is single. Mike, who is in his early '50s and has been out of the dating scene for a while, is currently enjoying his first transplant. Speaking from personal experience, Lori, Stephen and their guests reassure listeners that a diagnosis of chronic kidney disease (CKD) does not mean that a person cannot enjoy all of the pleasures that life has to offer, including dating and marriage. In fact, springing the news on someone that you have CKD can actually help separate the wheat from the chaff.
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Diagnosed at 11 Years Old! (Podcast)
Besides having the same rare blood disease, learn how many things Jessica, now 19 years old, has in common with Lori including the love of animals and laughing at Stephen’s jokes. You will hear her positive attitude.
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Dialysis Dining on the Go (Podcast)
Cynthia West, MD and Allyson Almeida, RD know that good nutrition is one of the most important factors for living well on dialysis. Often patients need to make major changes to their diet once they start dialysis and that can be a daunting task. Stephen and Lori talk about the difficulties of adhering to the dialysis diet and learn tips from the authors that are in their new pocket size booklet that provides information on foods you can eat at restaurants and buy at the grocery store. This episode will make you hungry without the guilt.
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Do You Know Who Is Sitting Next To You In Dialysis?
As I reflected on all the years I’ve done dialysis treatment, I realized that socializing with other patients at the dialysis unit has been my most positive experience. I have always enjoyed getting to know a new person, intrigued to discover our similarities as much as our differences. However, combine the idea of a dialysis treatment with the idea of “social benefits,” and being able to socialize with others ends up on the top of the “Least Likely To Do List.”
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Don't Sweat the Kidney Stuff! (Podcast)
On this week’s show, Lori Hartwell and Stephen Furst speak with Howard Feinberg--a dialysis social worker, psychotherapist, and kidney patient who, having been a patient for more than 25 years, can speak from a position of authority when it comes to dealing with the myriad of emotions that go hand in hand with chronic kidney disease. Do you ever get the blues? Do you ever feel down and out? Do fear and denial keep you from learning about your illness? Take comfort... you’re not alone. These emotions are common, normal, and even expected when dealing with a chronic illness. Even longtime patients such as Lori (who’s survived kidney disease for 38 years!) still go through the emotional ups and downs. “When I get my lab results and my creatinine is normal, I have a sense of relief,” says Lori. “But leading up to that, I’m still nervous and anxious.”
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Don't Wait For the World to Change (Podcast)
This week on KidneyTalk, we are on location at the Annual California Dialysis Council Meeting in Palm Springs, CA with Marc Chow, Director of Government Affairs for Satellite Healthcare and Mike Arnold, CEO of Arnold & Associates, Inc.
Mike Arnold says "Unless we're there to stand up for our community...we're forgotten about."
Ever feel that way?
In this interview Marc Chow and Mike Arnold offer their respective expertise on why it is so important for the kidney community to take a stand, get involved, and make a difference...and how. You'll find it's not as hard as you may have thought.
"Dialysis patients are different, it's a very fragile population. They need to be thought of differently, and treated differently, and must be addressed differently." Mike Arnold says.
Learn about the Kidney Care Quality and Education Act of 2007 and some of the state issues heading our way.
Be sure to tune in to this very informative interview, and make an impact that will help change kidney patients' lives...for the better.
To learn more about The California Dialysis Council please visit www.caldialysis.org.
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Donate Life Rose Parade Float - 2008
The increasing need for donated organs has motivated the transplant community to adopt creative techniques to inspire people to choose to be organ and tissue donors. Among such efforts, perhaps the most innovative and far-reaching is the entry of the Donate Life float in the world-famous Rose Parade, held on New Year's Day every year in Pasadena, Calif.
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Educate Yourself With This Fun Dialysis Trivia Quiz-1
Test yourself with these entertaining questions about kidney disease.
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Education is Key to Living a Better Life with Kidney Disease (Podcast)
According to this week’s guest, Dr. Ken Kleinman, MD, president of Nephrology Medical Associates and CEO of South Valley Regional Dialysis Center in Tarzana, CA, education is the key to managing any chronic illness, especially kidney disease. It’s hard to learn everything you need to know about kidney disease. And when you do learn, you run the risk of forgetting it. But don’t worry... it happens to all of us. Dr. Kleinman says, “You don’t just have kidney disease—your entire body is out of whack because kidney disease affects your whole body. There is so much information to learn that you just can’t do it all in a 15-minute visit.” So what are we to do? It’s up to us as patients to learn all we can about our disease, since we’re the ones who have to live with it every day. We can begin the learning process by asking questions, starting with our own nephrologists.
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Employment: Barriers and Solutions
Given the common knowledge that Social Security Disability Insurance is almost universally available to them, dialysis patients may wonder why they should bother to work. Besides increased income and possible employer insurance, there are tremendous psychosocial benefits. Work not only confers a sense of accomplishment and creates a sense of identity but it also fosters greater independence, creates increased opportunities for socialization, and ameliorates depression.
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Enrich a Life- Share Your Knowledge
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.
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Essay Winners Spend Day Shadowing Transplant Surgeon and Learning About Dialysis
Five southern California high school students became "transplant surgeons" for the day on Thursday, April 24, at St. Joseph Hospital in Orange in conjunction with National Donate Life Month and National Take Your Child to Work Day.
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Excercise for Life!
I find it funny when people say, “You look good! Why do you exercise?” I respond, “Maybe it’s because I exercise that I look good.”
When I encourage people to exercise, they often say, “I don’t have time in my busy life.” I then ask, “How is your life so busy?” The usual answer is, “I work nine hours a day with an hour commute.” That’s when I share that I’m a daddy of six active children, an arts administrator, and a religion teacher at church. And oh, by the way, I also have kidney disease. But I’ve made a commitment to myself to exercise at least three times a week. Life is about choices, and I choose to “Exercise for LIFE!”
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Exercise Program Tips for Dialysis Patients
Although you see your physician regularly to control your blood sugar and your BP, what are you doing to increase your physical activity? It is equally as important--and maybe even easier to control--than BP and blood sugar. You can be more physically active, and it may just save your life.
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Eyewitness Account of Kidney Donation (Podcast)
Donating a kidney to a friend or family member is becoming more common. Listen to Phillip Palmer, weekday morning anchor for KABC7 Eyewitness News in Los Angeles and hear him describe his journey of what it was like to give the "gift of life" to his good friend Dale Wade Davis. Phillip describes how he made the decision to become a living donor and what inspired him to make this decision. Don't miss this extraordinary act of kindness!
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Fast Food Facts
Quick-service restaurants provide us with a quick, easy, inexpensive bite when we're pressed for time.
If you are a regular through the drive-up window or frequently dine in at fast food restaurants, keep these tips in mind:
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Fight Procrastination
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?
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Finding a Kidney on Craiglist (Podcast)
Larry Green is an accomplished artist and spent many of his dialysis days drawing his access arm capturing the different needle angles, tape and changes he saw occurring to help pass the time. He was becoming restless with the time dialysis took. One day he had an epiphany and realized that if he wanted to get off of dialysis and get transplanted, he would have to take control. Here is the amazing story of how he found his kidney on Craigslist from an altruistic donor.
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Finding the Funny
There is nothing funny about being sick, or is there? The answer is yes and no. Surely, it's no fun having an illness, but it can be far more bearable when viewed from a humorous perspective. In fact, many professional comedians have taken real life tragedies and turned them into comedy gold. Richard Prior's bit about experiencing a heart attack is one of the funniest I've ever heard. Louie Anderson tells of growing up with an alcoholic father and he brings down the house. Robert Schimmel's routine on surviving cancer has been called "simply hilarious."
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For the Love of Pets (Podcast)
Have you ever thought about talking with the animals, like Eddie Murphy did in the movie "Dr. Doolittle"? Maybe you already do. And if you're like Lori, who has an African gray parrot named Johnny, then you have a pet who will talk back! All pets have a way of barking, cawing, meowing, and simply snuggling their way into our hearts. And that's a good thing, according to certified pet therapist Deb Hurdle
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Forget Uncle Sam, WE need you!
It's a very important time to be an informed and active kidney patient; we have a lot of work ahead of us. With the advent of bundling we know that there are changes to be aware of and the unintended consequences they may cause in the provision and quality of our care. There are a number of issues arising at both federal and state levels that could greatly impact access to necessary treatments and medications for the nation's renal patients. State budget crises across the country are resulting in proposed cuts that could threaten access to quality care for the most vulnerable patients.
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Four Things That Matter Most
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.
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From the Ironing Board to Tokyo: My Worldwide Adventures as a Peritoneal Dialysis Patient
In May 1999, it became clear that I would soon have to start continuous ambulatory peritoneal dialysis (CAPD). Since I had planned to visit an inter-religious conference in Vancouver, British Columbia, Canada, that summer, my first question to the nephrologist was: "Will it be possible for me to travel there?"
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Garden Delights
My garden provides more than just good food. Digging, bending, reaching, squatting, lifting, and numerous trips back and forth to the garage are all great calorie-burners and muscle-strengtheners. After a few hours, I know I’ve given my body a good workout! I’m tired but invigorated. In my garden, all my senses wake up—as I feel the warmth of the sun and hear the birds singing, as I smell the fragrance of damp grass and as my fingers touch the cool, soft earth. Every part of me pulses with life and exhilaration. My garden sprouts the miracle of life in my heart.
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Getting Well with Humor
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.
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Got Antibodies?
Have you had a prior transplant? Multiple pregnancies? Blood transfusions? If you are on a transplant list, has your transplant center reported to you that you have high levels of antibodies? If you answered "yes" to any of these questions and are not sure what this means or what you can do about it, here is some information to help you out. If you have high levels of antibodies, you may have been told that it will be hard to get a donor match or that there isn't any treatment out there to help you. Here is a bit of good news; leading hospitals such as Cedars-Sinai Medical Center, Johns Hopkins Hospital and The Mayo Clinic have published studies that show there is hope and that you can increase your chances of a successful transplant. This treatment is called desensitization.
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Help Your Family Make the Kidney Connection
Twenty six million Americans have signs of kidney damage based on urine or blood tests. People of all ages and races are at risk for kidney disease, but African Americans are much more likely than other groups to develop kidney failure, which is severe kidney damage requiring treatment with dialysis or kidney transplant. In fact, African Americans are four times more likely than Caucasians to be diagnosed with kidney failure.
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High Antibody Count - What To Do? (Podcast)
Howard Feinberg had a transplant that unfortunately ended up failing. Now back on dialysis, and back on the list he learned his chances were very slim to receive a second kidney. Howard took control of his care and found out all his options. He learned of a new therapy that helps reduce your antibody count. Listen to Howard's journey of how he was able to receive his second transplant.
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Ho, Ho, Ho, It's Chef 'O' (Podcast)
It's feast time this week on KidneyTalk! Lori and Stephen sit down and chat (and drool) with Oliver Hale-Chef O-a professional chef, award-winning tennis player, and a kidney patient who's had a successful transplant for over 22 years. Chef O hosts his own cooking show, Chef O's Place. His background is French gourmet so he loves sauces but he makes them very healthy as he does all of his dishes. One of his favorite ingredients to use is "Oliver" oil.
He describes a passion fruit dessert that he creates that sounds scrumptious but the real passion is in his voice when he talks about cooking. It's easy to see why he loves what he does.
Pull up a chair, invite a friend over, and pull out your napkins as you listen to our tastiest show ever. We promise you'll be drooling as much as Lori and Stephen.
Chef O...we'll all be arriving shortly for dinner!
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Holding Infinity in Their Palms: An Ode to Dialysis Patients
Time spent on dialysis is long, 12-to-15 hours a week, plus transportation between home and the dialysis unit; or setting and cleaning the machine if they perform the treatment at home. And, frequently, they feel tired and fatigued after treatment because of the rapid shift in body chemical composition and change in fluid volume. Many of them are in the hospital a lot of times for repeated infections or clotting of the bloodline, or for heart disease and shortness of breath.
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Holiday Dining Tips
The best piece of advice for dining during the holidays is to do your homework and plan ahead with regard to what you can eat.
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Holiday Eating Tips: Eat, Drink, and Be Careful (Podcast)
This week's special guest is Sara Colman, a renal dietitian and DaVita's Nutrition Project Specialist. Sara, who is co-author of "Cooking for David," discusses guidelines for eating, drinking, and being careful not to overindulge during the holiday season. Lori and Stephen ask Sara questions about navigating all the holiday goodies, dinners, and alcoholic and non-alcoholic beverages while maintaining a renal-friendly diet. Tune in and discover tips for controlling your intake at the holiday buffet table, learn how to play the "buffet game," and collect some new recipes that are packed full of flavor and are also renal-friendly that your family will enjoy as well.
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Holiday of Hope at Staples Center
There were caramel apples and cookies to decorate, games to play and music to dance to, but the fun really started when world-famous comedian George Lopez and Los Angeles Lakers star Kwame Brown, hosts of the 3rd Annual Holiday of Hope at Staples Center, showed up to give interviews and autographs. Crowds of kids bombarded Kwame and George for autographs on programs, admittance tags, photos, t-shirts and even elbows-and to have their photos snapped with their heroes!
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Hope, Sprinkled with a Generous Dose of Humor, is How My Husband Dealt with Kidney Failure
It's no different in the world of kidney disease. Shortly before we met in 1967, my husband, Jerry, was diagnosed with chronic kidney disease (CKD). In 1980, he began a 25-year stint on home hemodialysis (HHD). During those years, he was a model for everything positive and hopeful about living well with CKD.
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How Can You Care For Your New Kidney Transplant?
No matter how long you have your new kidney, your body will always know that it does not belong to you and will try to attack it. As long as you have a working kidney transplant, you will be taking medicine to prevent rejection.
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How Kidney Patients Can Effectively Communicate with Their Case Managers
Renal Case Managers specialize in the delivery of care to individuals with chronic kidney disease (CKD). Their primary role is to coordinate the continuity of care and help ensure that individuals get the proper treatment at the right time in order to maximize their outcome.
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How to Deal with Difficult Staff (Podcast)
Do you smell microwave popcorn while at dialysis? Has a nurse or technician yelled at you because of your fluid intake? Is waiting in the lobby for 30 minutes or more for your dialysis appointment acceptable? Listen to this weeks show as social worker, Ramiro Valdez, Ph.D gives advice to Lori and Stephen about how to deal with these and other situations. Learn that the staff is sometimes afraid of the patients, just as the patients are afraid of the staff.
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How to Get Involved in Your 'Network'
Have you ever had times when another patient helped you and you thought, “I want to be like that and help other patients have a better quality of life”? There is something about being a kidney patient that often causes us to see other patients as family and want to help them live healthier, happier, and longer lives. A great way to do just that is by becoming involved in your local ESRD (end-stage renal disease) Network.
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How to Make the Holidays Hassle Free - and Add a Sprinkle of Joy!
The holidays can be full of joy and lasting memories. But they can also add stress in our lives, especially when we are balancing the many issues kidney disease brings to us. Here are a few suggestions on how to enjoy the holidays with fewer hassles:
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If You Could Read My Mind, Love
So many times I wish my wife could have read my mind. How much easier that would have been! Despite our closeness, despite the extraordinary number of hours spent together on my dialysis nights, despite long rambling conversations about everything and nothing, she still wasn't privy to all my thoughts.
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Informed, Committed, Understanding Legislators
We see our elected leaders on television, we read about them in the newspapers, and sometimes we even encounter them in person. Most of the time these elected officials are doing the talking-they tell us about themselves, their plans, their policies, and their problems.
Election season turns things around. Now, it's our turn to speak, and our leaders must listen. They know that to get our votes they will need to understand our interests and concerns.
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Interview with the Healthcare Professional - Caregivers Appreciated
Chicken Soup Author LeAnn Thieman, RN, Believes That Dialysis and Other Chronic Illness Caregivers Should Be 'Honored and Appreciated'
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Is It a 'Bundle' of Joy (Podcast)
The dialysis industry will be encountering one of the biggest financial payment changes in decades. The term is called "bundling of care." Medicare pays one lump sum for dialysis services and the dialysis providers need to figure out how to deliver quality care and sustain profit margins to stay in business. Diane Wish, RN, President of the National Renal Administrators Association and CEO of Dialysis Centers of Ohio, explains what the bundle is and the potential impact it may have on patient care and outcomes. Will this new payment system deliver?
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Islet Cell after Kidney Transplant (Podcast)
Renae Jacob was diagnosed with type-one diabetes and was told that her kidneys would fail someday and she would need a kidney transplant. Luckily, she was able to receive a kidney from her girlfriend. Diabetes impacts the pancreas and Ranae learned she was a candidate for a clinical trial of islet cell transplant which, if proved successful, would end the need to take insulin and would help her pancreas to start working again. Hear her remarkable story of courage and hope.
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Jodi Picoult - Best Selling Author (Podcast)
“My Sister’s Keeper” is the story of a girl brought into this world to be an exact donor match for her ailing sister. Since birth, the girl has donated blood cells, stem cells, and bone marrow. At age 13, she’s told her sister needs a kidney transplant. But tiring of giving parts of her body to keep her sister alive, she hires a lawyer to sue her parents for medical emancipation.
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Journey from Adolescence to Making a Difference (Podcast)
Valen Cover has an inspiring story of making lemons into lemonade, which made her the focus of an award winning book called, My Favorite American. She was diagnosed with Polycystic Kidney Disease at a very young age. Her triumphs and challenges of growing up with this illness taught her what is important in life and has lead her to a path of educating others. She shares her inspiring story, coping strategies and what her goals are for the future.
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Just an Annoyance: Confronting the Dialysis 'Baggage'
When faced with a chronic disease, every person reacts differently. Becoming "the patient" is never as simple as lying down and gracefully submitting to whatever treatment is recommended. Entering the world of ongoing illness, we drag along a conglomeration of baggage-upbringing, past experience, relationships, culture, religion, and fears.
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Keeping a Positive Attitude (Podcast)
Determination and a positive attitude make for a great winning team. This week on KidneyTalk Lori and Stephen visit with Jim Dineen, a fellow kidney patient, who knows something about determination and a positive attitude. When Jim inquired about a kidney transplant, he was turned down twice. But he didn’t allow that to stop him. Neither did the near death experience nor the…From Vietnam in the 60’s to kidney failure in the 90’s, Jim has always checked his attitude and maintained a hopeful outlook. He hasn’t let the obstacles in life stop him from living. He says, “I have, for many years, tried to live my life by these words: ‘If you think you can or think you can’t, you’re right!’” Jim thinks he can and he proves it with his unbeatable optimism, which is why we think he’s a winner! Tune your dial to KidneyTalk and hear Jim’s encouraging story.
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Kid'ney Kids Calendar - 2008
On Friday, September 14, 2007, eleven separate planes arrived in Washington, DC, carrying a few very special visitors. The 11 visitors, accompanied by family members, range in ages seven through 18 and have won the American Kidney Fund's (AKF) 12th Annual 2008 National 'Kid'ney Kids Calendar art contest for children with kidney disease.
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KidneyTalk! Celebrates 100th Show: The Remarkable Ed Spence (Podcast)
“Live your life” is the motto by which Ed Spence lives his daily life and encourages others who have kidney disease. You don’t want to miss this inspiring show as we travel along his 34 year journey of overcoming the trials and tribulations of kidney disease with an attitude that is unstoppable.
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Kids With Kidney Disease Can Realize Their Dreams and Live Long, Normal, Productive Lives
It is important upfront to realize and believe that, like many adults, children with kidney failure requiring dialysis and/or a renal transplant can live long, normal, productive lives. And equally important: kidney kids can realize their dreams! While there will be barriers to jump and setbacks to overcome, there will also be the ultimate triumph of living happy lives. Your parents, friends, and renal healthcare team will be especially helpful to you.
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Kids, Clowns, and Dialysis: The Pediatric Dialysis Program at the Joe DiMaggio Children's Hospital
There is a wonderful place I recently visited whose dedicated professional medical staff does its best to provide the very best treatment it can to a child or adolescent with kidney disease and renal failure. It is the Comprehensive Pediatric Dialysis Program at the Joe DiMaggio Children’s Hospital at Memorial in Hollywood, FL. Now, you wouldn’t think a hospital would really be a great place, particularly for kids, but this place is one of a kind.
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Know Your True Colors (Podcast)
Lori Hartwell and Stephen Furst talk about what color they are and the differences in people’s personalities with Bill Gallagher. With 25 years of experience counseling and professionally working with people, Bill has become a sought after motivational speaker, conducting conferences, retreats, and seminars on personality issues, conflict, and achieving success. Bill says; "Understanding personality differences is critical in healthcare... it teaches you to have more tolerance and understanding for people not like you." Based on the theory by the 'Father of Medicine', Hippocrates, 300 B.C, there are 4 types of personalities. Learn about what color you are and find out more about personalities strengths and weaknesses.
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Laughing Through the Illness (Podcast)
On this week’s show, Lori Hartwell and Stephen Furst visit with comedian Howie Mandel (pictured right), host of NBC’s new hit game show “Deal or No Deal.” Laughing in the midst of tough situations may not come naturally for everyone, but a good sense of humor can definitely help lighten the mood. Oftentimes, humor is just the medicine we need.
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Laughter is Cheap Medicine
Months went by, and no laughter—only pills, doctors, and the harmonious beep-beep of the machines. I felt fragile, and worst of all, sick.
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Life Jacket Required (Podcast)
Who said dialysis requires water limits? Bill Peckham's adventures on the water say it's not so. Listen to an interview with the 20 year dialysis veteran, as he shares his travel stories, and see why, with dialysis, you can still have an adventurous life.
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Living the Writing Life and Being a Peritoneal Dialysis Patient
As someone who has written 43 books down through the years, I am seen as having some sort of supernatural gift. Instead, I started out at least as wide of the mark as Austin and his basketball. With practice, I grew faster and more accurate. Skill? Intellect? I wish I had a lot of either. What I do have is tenacity, the belief that, by now, I can hit some sort of literary basket every time I shoot.
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Looking for Adventure: A Grand Waltz with Dialysis
This was not the first adventure Bill and the NxStage kidney machine have been on together. Bill traveled and dialyzed daily with his machine this last year on a road trip to Chicago with his dog, Cairny, taking in Yellowstone National Park along the way. He has also flown to three destinations with his machine. He can now say that he has been over land, sea, and air with his kidney machine.
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Lori's Lines "Building Your Confidence"
When the ups and downs of kidney failure get to me, it shakes my confidence, and I wonder whether I can ever do what I used to do or whether I have the courage to try something new. You see, I have this jury in my head: About half of the jurors think I should live freely and joyously, and the other half are ready to abandon me to my insecurities.
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Lori's Lines "Buttons are Helping Me Keep it Together"
As you may know, I have a number of health challenges. When I started back on dialysis last March, after a 20 year run with my kidney transplant, I needed to again adjust to living on dialysis. At times I felt a bit down and frustrated. Although I had been on dialysis before, I again had to learn to adapt to this major lifestyle change.
As individuals with a chronic disease, how can we deal with the bumps in the road that seems to continually appear before us? One of the strategies I use to cope with challenges in my health status is to engage in the creative process.
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Lou Grant Rides Again in Nephrology, News and Issues (Podcast)
Mark Neumann is the Executive Editor of NNI, a position Stephen compared to the curmudgeonly but beloved character played by Ed Asner on TV. Find out directly from Mark how you as a patient can submit an article or write a letter to the editor, get the inner scoop on Mark’s favorite topics, the recent issues he has covered and what he has learned in over 18 years on the job. Get informed! Stay informed!
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Love, Marriage, and Yes...Dialysis
Every story has a beginning as does every relationship. For Cyndi and me, it began in high school after I had been diagnosed with glomular nephritis at the age of 15. We met at our church’s youth group and I have always said that she had me from “Hello.” We went to prom together in 1985 as friends, but never crossed the line of friendship in high school
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Lucky Numbers (Podcast)
"You have to know your numbers," says Lori. No, she's not referring to the lotto, but to your real lucky numbers. The numbers that help keep you alive. Today, Mandy Trolinger, Renal Dietician and two-time transplant recipient talks about numbers and your diet. She says; "...By knowing your numbers you can be your own advocate, and prevent, or slow the progression of certain diseases and complications...It all starts with knowing your numbers."
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Make the Most of Your Doctor Visit
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.
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Making the Magic Happen (with Michael Grasso)
Fans of America's Got Talent will remember Michael as a finalist in last season's competition. During the show he shared that he had received three kidney transplants, all from living donors. As Michael's story was shared with a national audience, new opportunities arose. Professionally, the show took Michael's career to a new level. Within the renal community, we realized there was an inspirational story to be told about following their dreams.
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Managing Stress: What Kidney Patients, Family Members, and Caregivers Need to Know
Trying to replace what kidneys used to do requires hemodialysis treatments three times a week, or daily exchanges for the peritoneal dialysis patient, or a renal transplant. But dialysis is just the beginning. There are daily medicines, dietary restrictions, fluid limitations, and financial burdens that accompany dialysis treatments. This can result in extreme emotional stress.
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Medication Tips (Podcast)
This week on KidneyTalk, Mike Josbena, MS, RPH, President of Wordsmiths Health Communications talks with Lori Hartwell and Stephen Furst in depth about medication. What is medication? Where do you store medication? You'll be surprised to hear where in fact you should not store your meds. What about herbal medication? Is it really medication? Can vitamins hurt you? What if you forget your medication? Listen in to this fun and insightful show, and find out the answers to all these questions and more.
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My Terrific 'Normal' Life
I was born June 13, 1970 in Houston, Texas, a healthy, “normal” baby girl. At age 3, my family moved to Kenner, Louisiana, outside New Orleans. As a child, I loved sports. I played volleyball, basketball, and softball. I was best at softball. I played each summer in a neighborhood league. One of my childhood friends that I played with, Paige Weber, was the best in the league. She went on to play softball on a statewide level
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New Years Resolutions for the Renal Diet
From Thanksgiving to the new year, patients with kidney failure in particular must be careful what and how much they eat. Holiday foods are replete with phosphorus, potassium, and sodium. Therefore, it takes some effort for kidney patients to be extra adherent to their renal diets. Here are some tips from one of our favorite renal dietitians on how to eat healthy year-round
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Nine Years on Dialysis and Still Working
I started dialysis nine and a half years ago and at that time, as I lay in my hospital bed undergoing three days a week dialysis on an emergency basis, I wondered if I would ever return to my job.
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Nutrition Tips For Enhancing the Dialysis Patient's Quality of Life
Good nutrition is a very important part of your renal treatment plan whether you are on hemodialysis (HD) or peritoneal dialysis (PD). To move forward with your best in all aspects of your life as a kidney patient, make an effort to maintain yourself by eating enough of the right kinds of foods or less of those "forbidden" foods.
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Overcome the Exercise Excuses! (Podcast)
So many reasons not to exercise, but what reasons do you have TO exercise? Shari Gilford has been the Graphic Designer and Managing Editor for RSN’s patient newsletter Live & Give; a current transplant recipient; previously on nocturnal home HD, in-center HD, CAPD, CCPD; and a recipient of two other transplants speaks with Lori Hartwell and Stephen Furst about motivating yourself to exercise. Shari is a busy woman, and her life has not been an easy one, yet she is happier, younger, and more energetic than ever. It all starts with the will to exercise. Refusing to let her difficulties dictate to her what she could and couldn’t do, she took control of her health and made a positive change to her entire life.
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Overcoming the Stumbling Blocks of Kidney Disease
Did you ever think life just wasn't treating you right? Maybe things were just going along great and the Boom!--something happens to change your entire life's focus. Maybe you thought you had a handle on a particular problem or issue, and then one little change turns your world upside down.
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Perceptions: Images in a House of Mirrors
The misconceptions about dialysis can be repetitive, frustrating, and nowhere near reality. So what can we, as patients or family members, do to counter these distorted images? Think Education, Attitude, Communication, Humor! “EACH” of us can reflect an image that will help portray dialysis in a more positive light.
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Pet Therapy: Wagging Tails Come to You
Not only is a warm fuzzy face or a wagging tail a friendly distraction, but spending time with therapy animals can actually have physical benefits as well. Studies have shown that interacting with animals can lower blood pressure, reduce anxiety and stress, and generally calm a person. As a dog, cat, or other animal offers loving and empathetic support, it also helps aid healing.
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Peter Quaife-Rock Star (Podcast)
Peter Quaife, a former member of the popular 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.”
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Preparing for Emergencies: A Guide for People on Dialysis (Emergency Food List)
Emergencies caused by severe weather or disasters can happen with or without warning. This Emergecny Food List prepared by CMS, is to be used in conjuction with the 3-day Emergency Diet Plan and will aid you in your emergency preparedness so you can feel better and stay healthier.
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Reducing the Boredom of Dialysis with I-Pods
When it comes to dialysis, boredom, unfortunately, is part-and-parcel of the experience -- not fleeting boredom, but typically hours of boredom. TV’s are available to help, but as we all know, they only help for some people some of the time. A new approach uses iPods loaded with a patient’s favorite music to improve the dialysis experience. “When I started dialysis,” says Anna Adams, “I was grumpy all the time. But once I started using an iPod, this boosted my morale. I wasn’t grumpy any more and I really looked forward to coming to dialysis.”
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Seeing the Big Picture: Communicating With Your Nephrologist About Goals and Expectations
What are the expectations of my patients, and how do they compare with my own expectations of them? Is there more that we can do together to allow patients to accomplish those goals? Free and open communication is an absolute necessity if patients are to achieve their goals and not fall prey to the trap of low expectations coming either from themselves or their caregivers.
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Seize the Day: Coping With Dialysis
Your social worker is an advocate for you and is there to help you. Discuss with him/her any issues you may have regarding dialysis or receiving a transplant.
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Shedding a Light On Depression (Podcast)
Am I depressed? After 11 years as licensed clinical social worker and administrator of a dialysis facility, plus 5 years working for the renal network, Mark Meier has the know-how to pull away the stigma, the secrecy, and the shame of depression to reveal a treatable illness whose symptoms have been experienced by most people at one time or another. Tune into this remarkable show to learn more about depression, what causes it, why diabetes and CKD patients may be more susceptible to it, and how you can find your way back to the sunny side of the street.
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Sit, Fit for Life (Podcast)
Hey, all you “couch kidneys” out there! Do you hate to exercise? Does the thought of just saying the word “exercise” tire you out? You’re in great company because Stephen hates to exercise and struggles with having enough energy, which our guest this week says he hears kidney patients say all the time. This week on KidneyTalk Lori and Stephen visit with Dan Bayliss, Clinical Coordinator of the SitFit exercise program at the University of Virginia Renal Services department. Dan discusses some fun and creative ways to exercise and tells us why it’s so important for our health. Listen in and discover all the benefits of exercise – you’ll be surprised and maybe even motivated to get moving! Let’s get physical
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Slip, Slop, Slap- Preventing Harmful Effects of the Sun
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.
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Smart Snacking Choices for the Dialysis Patient
Hungry? Not sure what to eat when you get the munchies? The following are some ideas on what to eat in between meals to help you maintain your nutritional well being without all that extra potassium and phosphorus. Each "smart snack" contains less than 130 milligrams (mg) of potassium and less than 80 mg of phosphorus. Check with your renal dietitian on the number of servings that are appropriate for you.
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So You Think You Can Dance...My Life as a Dancer and Dialysis/Transplant Patient
At 4’11” and 98 pounds, I’m petite, and have been all my life. So, needless to say, when I tell people that I have four kidneys and two pancreases, they are shocked. But, really, I’m very fortunate. I’m alive today because of the support and love of my mother and father and the expertise of amazing medical professionals.
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Social Networking at the Transplant Cafe (Podcast)
Nelson Freytes went to the hospital and ended up in a coma. He awoke with a new liver. What makes this story so fascinating is he never knew he needed a transplant until he had one. Nelson wanted to connect with others and as a result created transplantcafe.com. Join us for a cup of java and hear some ways he's made his transplant work for him.
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Something For Everyone at the U.S. Transplant Games
The success of transplant athletics--specifically, the U.S. Transplant Games--has created new opportunities to demonstrate the success of transplantation and the critical need for additional donors.
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Spicing Up Your Renal Diet (Podcast)
On this week’s show, Lori Hartwell and Stephen Furst speak with Mary Polucci, a renal dietitian who can help add a bit of flavor to your life. “Parsley, Sage, Rosemary, and Thyme” are not only the words to a flavorful 1960s pop song, they’re also great-tasting ingredients in spicing up many foods. Do you love to cook? What are your favorite foods? As kidney patients, we’re know that the renal diet can be challenging, especially restricting salt. But you don’t have to miss out on flavor if you know how to be creative. Lori’s favorite recipe is turkey tacos, using ground turkey instead of ground beef to reduce calories and cholesterol. For Stephen, cooking Italian food is his favorite. Because his wife is a vegetarian, he adds tofu to his homemade sauce. Voila... creativity
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Spring Fling: Earning Your Dialysis Dollars
"Have you earned your Dialysis Dollars today?"
That was a common question heard throughout the Jane Phillips Dialysis Center in Bartlesville, Oklahoma. We began this motivational program for our patients in November 2006. The social worker and dietitian worked together to develop a way to involve patients in their own healthcare and well-being. Our goal was to get as many patients as possible interested in their lab work and attitude in an effort to improve their health, increase happiness, and encourage hope.
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Stop Thief! Protect Yourself Against Medical Identity Theft
One week after having a spot on my forehead removed by a new dermatologist, I received a notice from his office stating that their medical records had been compromised, and recommended that I put a fraud alert on my credit reports at the three major credit bureaus. So far, it appears that no one has tried to use my information to establish a new medical identity.
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Straight Talk on the Big Three: Sodium, Phosphate, and Potassium (Podcast)
Do you ever feel like your food choices are too limited? Are you discouraged when the low sodium food you just discovered is high in phosphorus? Did you know that sometimes your favorite protein might have unexpectedly high salt? Gaynell Irving gives listeners some straight--very straight—talk about negotiating the fast food menu, salt substitutes, thirst, dairy products, liquids and much more. Here’s some encouragement to drive straight on the food highway.
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Sunny Delight! Understanding Vitamin D (Podcast)
What does Vitamin D do for your body? What foods are the best source of Vitamin D? Why are so many people who have chronic kidney disease deficient in Vitamin D? Gail DeWald who has over 24 years as a Certified Nephrology Nurse, will answer these questions.
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Sustaining a Loving Relationship While Living with CKD
Dialysis is unique among chronic diseases. Because it keeps you alive for years, it is viewed medically as highly beneficial. But it will never provide a cure, only a lifetime of dependence on a mechanical kidney. If you are fortunate to have a successful transplant, which I had two and half years ago, you may escape dialysis for a time. But transplants eventually fail. So you are never far from the reality that your life depends on a machine. That's a heavy load to carry mentally, and with it the depression, anger and resignation it brings.
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Taking Dialysis on the Road (Podcast)
"On the road again...." Four simple words that once seemed impossible for dialysis patients. But not any longer! On this week's show, Lori Hartwell and Stephen Furst talk with someone who helps make dialyzing in another city or state (or even another country) a lot easier. There was a time when it was difficult to arrange treatments for hemodialysis patients who wanted to travel. Dialysis facilities didn't always have openings for patients who wished to receive only one or two treatments. The facilities also may not have had enough staff to accommodate visiting patients. Thankfully, times have changed.
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Taking the Leap: Transitioning From a Pediatric to an Adult Dialysis Unit
For a lot of pediatric patients, visits with their nephrology team can be like going to a department store: they take an interest in a lot of things. You may have gone into the store because you are have a special need in the kidney aisle, but end up passing by the immunology section on the way in and on your way out the dietitian counter offers you special incentives.
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Thanksgiving - Indulging Can Be Hazardous
Thanksgiving is almost here. We will gather with family and friends and share a tasty meal. For most people, it is a happy occasion. However, some people dread the festive feast. Many people who live with chronic kidney disease have dietary restrictions that don't coincide with the culinary delights of the holiday season. The dialysis diet can be difficult to adhere to during the holidays, so it is important to make sure your holiday meal is healthy. And remember many family members may be dealing with their own dietary restrictions.
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Thanksgiving Helpful Eating Tips (Podcast)
This week’s guest is Sarah Colman, a registered renal dietitian and co-author of “Cooking for David.” She offers tips for making a great Thanksgiving meal renal-friendly. Listen in as Lori and Stephen talk turkey and share some of their favorite holiday recipes.
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The Good Dialysis Index
The "Good Dialysis Index" (GDI) potentially offers a more humane model of the dialysis patient as a whole. The GDI design attempts to mirror more closely the things that matter - not only to the nephrologist but to the patient - in the delivery of 'good dialysis'. Certainly, it serves this aim better than does the urea-centric, mathematically limited concept of Kt/V, restricted as it is to the narrow confines of small solute clearance. The GDI remains to be rigorously tested and validated as a predictive tool in the dialysis population, but it has certainly been simple and quick and easily applied when run against a small pilot patient group.
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The Great Equalizer: My Life as a Kidney Kid and Beyond
There comes a time in people's lives when they face a tragedy, a life-changing moment or string of events. It is how individuals handle adversity that will truly define them. It shows the world what they are made of and what their mark on their loved ones, their community, and even the universe, will be.
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The Kidney Matchmaker (Podcast)
Kidney chains, trains, exchanges and paired donation of kidney transplants are gaining media attention and helping people find life saving organs and expedite transplantation. Garet Hil, the President and Founder of the National Kidney Registry describes his journey with trying to find his daughter a kidney and how he was inspired to help solve the problem of incompatible donors for all.
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The Miracle Continues
Throughout history the word heroism refers to people that, in the face of danger and adversity; or from a position of weakness, display courage and the will for self-sacrifice, for some greater good. Patrice Smith, a total stranger, donated a kidney to our 21-year-old daughter, liberating her after 3 years on dialysis. With pure altruism, Patrice contacted our family, persevered through the evaluation process, traveled across the US and gave a beautiful gift of love and life - giving Jenna the chance to pursue her dreams, and live the life of a normal young woman.
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The National Kidney Registry
The National Kidney Registry was started and is personally managed by a complete transplant industry outsider - a dad who just wanted to find a compatible donor for his daughter. Below is the founder's story.
When my youngest daughter was 10 years old, her kidneys failed. When we learned that she would never recover her kidney function, I raced home to check my old military records for my blood type to see if I would be able to donate my kidney. I was overcome with relief when I discovered that we were both "A" blood type and I would be able to donate.
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The Renal Teen Prom-Part 1 (Podcast)
This week we will feature the first part of a two part series: Renal Teen Prom 2007. This week Lori and Stephen visit with the teens, volunteers, and guests at RSN's 8th annual Renal Teen Prom. Next week we'll visit with the celebrities who came and lent their support to this great cause. The gymnasium at Notre Dame High School-the site of the prom-was transformed into a "Midnight at the Oasis," this year's theme, complete with beautiful palm trees, delicious renal-friendly food, and of course, kids, kids, kids. Over 350 teens and their guests attended this year! Without the help of the senior student body of Notre Dame High School this event simply would not be as successful as it has been. They selflessly gave of their time to help make one special night come to life for the young kidney patients.
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The Renal Teen Prom-Part 2 (Podcast)
This is the second part of our two part series on RSN's 8th annual Renal Teen Prom. Last week we visited with the teens, guests, and volunteers. This week Lori and Stephen talk with the great celebrities who came out and lent their support to this fantastic event. The teens were excited to have the chance to mingle with the celebs and collect their autographs. The prom just wouldn't be the same without the wonderful support of the stars! The locale of the prom-Notre Dame High School-came alive with guest appearances by Sinbad, Alexa Vega, Gary Sinise, John McCook, Christy Carlson Romano, and the LA Clippers Dance team.
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The World or Bust
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.
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To Eat, or Not to Eat
Eating during hemodialysis could be a good idea for you. Dietitians are always reminding you to include enough calories and protein and not to skip meals. Since most hemodialysis shifts encompass a normal mealtime, you probably feel hungry when you’re at the unit. Eating during dialysis would seem to make sense. Moreover, if you have diabetes, you shouldn’t go for long periods without food, especially if you’re taking diabetes medications. Low blood glucose could result.
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To Live or Die (Podcast)
As if someone was directing an award winning dramatic film, Dawn found herself in the same shoes as her brother. Dawn says; "I was more afraid of dialysis and kidney disease than I was afraid of dying." Dawn chose the no treatment option, which left her with 3 - 6 months to live. She soon realized the hardest part of her decision was living in the guilt of looking at her family and knowing the pain that she was causing. But as Dawn says; "Tremendous amount of fear will make you choose things over guilt."
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Transitioning Out of Childhood for Young People with CKD (Podcast)
Lori has a heart-to-heart with Dr. Maria Ferris, Pediatric Nephrologist from the University of North Carolina at Chapel Hill, and specialist in treating adolescents and young adults with CKD. They discuss the unique challenges a young person can face, both those with childhood-onset CKD and those who develop CKD in their adolescence. Dr. Ferris and the team at UNC Kidney Center have developed helpful guidelines and tools for young people with CKD and their parents to help "smooth" what can often be a difficult transition; growing up can have a whole new meaning when you have CKD! All this and more, including discussion on the challenges of completing your education when you have CKD.
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Traveling Around the Globe: Adventures of a Hemodialysis Patient (Podcast)
Bill Peckham has undergone hemodialysis since 1990 and has traveled all over the world, dialyzing in 19 countries on five continents. Learn about his adventures and hear firsthand what dialysis is like in other parts of the world. So, you think your traveling days are over now that you're on dialysis? Think again. On this week's show, Lori Hartwell and Stephen Furst talk with Bill Peckham, a hemodialysis patient who has visited 29 countries on five continents since starting dialysis, dialyzing in 19 of them!
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Understanding How Inflammation Works (Podcast)
Dialysis is known to cause increased inflammation due to the stress it causes to the entire body as a whole. Dr. Amit Sharma serves on the Scientific Advisory Board of Nephrian and is President/Director of Clinical Research of Boise Kidney and Hypertension Institute. He explains what inflammation is and what tests help to detect it. He reviews various vitamins that patients need and describes why it is important to have the proper amount due to dietary and vitamin deficiencies caused by kidney failure.
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Valerie's Story
My introduction to ESRD first occurred when I was in the ER and the attending Physician came into my "room" patted me on my knee and ever so nicely asked me, "Have we ever had renal failure before?" To which I sarcastically quipped, "No, WE have not"! That twisted sense of humor was to be my saving grace throughout my forthcoming journey.
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Vegetarian Strategies for Kidney Patients (Podcast)
Have you struggled with trying to decide what foods have phosphorus and which ones have potassium while maintaining a vegetarian diet? Chhaya Patel, renal dietitian, has an extensive background on the subject matter and provides insightful and practical tips on choosing a variety of foods. The vegetarian diet comes with many options and lots of spice. Don't miss this juicy episode.
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We're Bringing Pasta Back
Pasta is cheap, quick, and easy, and normally topped with tomato sauce, usually from a jar. The problem is, of course, that tomatoes are high in potassium and not healthy for someone on dialysis, and the other options aren't any better. Jarred alfredo sauces are high in phosphorous and packed with sodium, and jarred pesto is made with pine nuts, which are high in phosphorous and potassium.
So I set out to find a few dishes you can make at home that are still quick and easy, and renal-friendly. I was able to come up with several recipes, and the good news is that they taste better than those jarred sauces, too!
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Websites For Kidney Kids and Their Families Offer a Broad Spectrum of Useful Information
Here are some great websites that kidney kids and their families may find useful in their journey to obtain a better quality of life for children with chronic kidney and other serious diseases.
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What Kids Need to Know About Kidneys
Everybody knows that some organs in the human body are necessary for survival. You need your brain, your heart, your lungs, and especially your kidneys...
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What Scares You about Kidney Disease (Podcast)
For our Halloween show, we sent out an e-mail asking people what scares them the most about kidney disease. (You guys really do exist out there in "Internet land" because we received a tremendous response!) Listen to the show to hear the top answers. What scares you? On this week's show, you'll also learn about renal-friendly Halloween treats. So, have a treat (watch the calories), listen to the show, and don’t let kidney disease scare you!
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Why We Crave Comfort Foods?
Everyone should feel free to enjoy comfort foods. You don't have to give them up completely, if you are on dialysis. Here's the trick: if they are eaten only on an occasional basis, no harm is done. But if large portions of these foods are frequently eaten, they contribute to excessive fluid gains, high blood pressure, high phosphorus or high potassium levels.
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Working 9-5: What a Way to Make a Living (Podcast)
Are you concerned as a kidney patient about maintaining your current job? Maybe youd like to go back to work, but believe you cant for one reason or another. If this is you or someone you know who is living with kidney failure, this is the show for you. This week on KidneyTalk Lori and Stephen talk with Beth Witten, who speaks, writes, and answers questions from patients and professionals about rehabilitation for the Medical Education Institute and is an expert on the topic of kidney patients staying employed or returning to work. Hear Beths advice regarding job discrimination, insurance, and disability employment plus other interesting facts about working. Tune to your favorite online radio station because there's good news waiting for you!
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