(I)nformed, (C)ommitted, (U)nderstanding 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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100-Plus Years of Kidney Patient Experience (Podcast)
On this week’s show, Lori Hartwell and Stephen Furst take part in a fascinating conversation on living long and well in spite of kidney disease. As you may know, Lori has been a kidney disease survivor for the past 38 years. Stephen, on the other hand, only recently started dialysis, so he’s “all ears” as Lori and two lovely ladies carry on a casual conversation about how they got to this point in their lives. Altogether, Lori and this week’s guests, Roanne Dale and Sharon Pahlka, share more than 100 years of combined kidney patient experience among them.
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1st Place - 2008 Essay Contest
First, I would educate them. Once a person has been diagnosed with renal disease and will need to begin dialysis, I would have a fellow dialysis patient who has had the procedure--catheter, life-site or graph--assigned to the new patient. Let them share their personal story about the surgical process, the healing period, and what the incision will look like once it has healed. Although my brain knows this procedure will not only save my life but give me a better quality of life, as a woman, my heart tells me that I will have a scar that will be unattractive and might limit my wearing of certain clothing. To some this might seem superficial but to a female, especially a young female, this is a very real concern. It's important to have affirmation from someone who has already been where I still have to go.
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2008 'Kid'ney Kids Calendar
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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2008 Donate Life Rose Parade Float
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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2008 Essay Contest - Spanish Essay Winner
If we had one hundred thousand dollars to improve conditions for renal patients, the first thing we would do is to make that amount into a renewable fund, protected by a well-known, trustworthy bank, and notarized so that it earns interest. To make sure that it would be used appropriately, we would select a committee of renal patients to represent their different shifts. This way, any fellow patient who requested economic assistance, would present their request, rightfully justified, to this committee.
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2008 Essay Contest - Spanish Essay Winner (spanish)
Si tuviéramos cien mil dólares para mejorar las condiciones del paciente renal, lo primero que haríamos sería asegurarnos de convertir esa cantidad en un fondo recurrente, protegido por un banco reconocido, fiable y notariado con el propósito de que gane intereses. Para asegurarnos de que se hiciera buen uso de él, seleccionaríamos un comité compuesto de pacientes renales que representaran sus respectivos turnos. De esta manera, cualquier compañero que solicitara ayuda económica, debería presentar su petición, debidamente justificada, a este comité.
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2nd Place - 2008 Essay Contest
I’m going with the theory that you start at home, make changes in your own neighborhood, city, or county, then, like a pebble dropped in a still pond, you wait for the ripples to spread the message. That’s how I am going to use these funds to try to move my state towards an opt-out program of organ donation. What’s that, you ask? Well, instead of asking residents to sign a donor card on their driver’s license saying they opt-in, they would be asked to sign a card saying that they DON’T want to be a donor and sign that. This then begins the process of re-educating the populace to believe they are considered an organ donor unless they say otherwise.
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3rd Place - 2008 Essay Contest
The portable artificial kidney, “Arty,” would be similar to a pace maker. “Arty” would be to the kidney what the pace maker is to the heart. The artificial kidney would be a small machine about the size of a woman’s fist. A patient would only need one artificial kidney that would be placed inside the patient’s body through a small 2 inch incision in the area where one of the kidneys is located. The artificial kidney would consist of a soft pliable type material that has a lot of micro fibers similar to a natural kidney’s nephrons. It would also take over the functions of a diseased kidney by filtering nitrogenous wastes and toxins from the blood and produce urine. The urine would then be stored in the urinary bladder until it is full. The urine would then exit the body through the urethra.
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A Brighter Day (2002 Essay Contest - 3rd PlaceTie)
Theme: "How the staff at your dialysis unit or transplant center encourages you to live a fulfilling life in spite of kidney disease"
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A Dream Come True for Stephen (Podcast)
Do you know what an altruistic donor is? What should you know about your transplant before you leave the hospital. Listen as Lori helps calm Stephen’s nerves by answering his questions, as he prepares for his kidney transplant!
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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 Friend Named 'Maggie' (2005 Essay Contest - 2nd Place)
Theme: "That Special Someone"
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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 Man Named Mr. Black
My aspiration and inspiration was a man named Mr. Black--a little black man who took a liking to me. Why me? I’ll never know, but I am grateful for his wisdom. It was my last day on treatment in the hospital. Then I would start my treatments in a clinic. I was lying sick in my bed when this gentleman told me to sit up. I managed to sit up and listen to his every word.
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A Memory of Butterfly Wings (2004 Essay Contest - 1st Place)
Theme: "TOUGH TIMES - A Memory or Dream That Gets Me Through"
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A Peaceful Mission Silenced
Seventeen years ago, I met Joey--a man who changed my life forever. We became not only partners in life, but in advocacy for ourselves and others who, like ourselves, had to live an effective life while dodging disease and its complications and treatment. We also had to learn to remain positive about our life's journey, to love, learn, and do for others what we had to do for ourselves.
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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 True American Hero: Marine Donates a Kidney (Podcast)
After two tours in Iraq, this soldier returned to a Thanksgiving Dinner that changed his life. There he learned that Daniel, a scarcely known cousin of his wife, desperately needed a kidney. So Darren Smiley practiced one of the tenets of his faith, to make life better for people. With this touching story of a patriot and compassionate human being, Renal Support Network salutes and honors the troops risking their lives to defend ours in this special celebration for July 4th, American Independence Day.
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Abbie-Ca-Dabra: “Holding a Piece of Heaven and Looking Into Eternity”
My husband, John, and I had been trying to have a baby for about three years with no success. With my kidneys failing, we knew this was a long shot and might push me over the precarious edge into ESRD. Dr. O’Neill was trying to gauge how supportive he should be to us having a baby, but, at the same time, was being realistic about our chances. He was concerned about what might happen to me if I got pregnant. When my creatinine hit 3.5, I stopped having my menstrual periods. I was then told I could not get pregnant, that it was virtually impossible for me to have our much-wanted baby.
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Advertising For a Kidney
We were shocked that our idea had brought attention to so many. The reporters couldn’t believe what an amazing idea it was to post an ad on this website for a kidney donor. They stated the website had never been used as a medical venue before. Once again, we didn’t know this. We just posted the ad because we knew we had to find a way to save our father’s life.
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An Interfaith KidneyTransplant (Podcast)
Rabbi Andrew Bossov needed a kidney. Reverend Karen Onesti said, “I’ll give you one of mine.” Catching up at their Interfaith Clergy meeting, and unaware of his condition, Rev. Onesti asked Rabbi Bossov why people were asking him how he was feeling. The rest of this heartwarming tale is the subject of a show filled with hope, faith and the goodness of human beings toward each other—and particularly timely at the beginning of April, National Donate Life Month.
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Are You Shooting Up?
When you pull out needles from your little black kit, people have a tendency to be fascinated. I think they also want to make sure you’re not going to come after them with the needles! Managing diabetes isn’t always easy, but it is necessary for optimal health.
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Back to the Future: Returning to Old Ways of Dialysis - With Improvements Of Course! (Podcast)
Mike Paget, who has been in the renal community for thirty years and serves as RSN Director of Operations, reminisces about dialysis and dialysis machines in 1977 in England for which he provided service and maintenance as an electrical engineer . Home hemo and overnight dialysis were the norm back then in this country with socialized medicine. Mike tells some fascinating stories about the early treatment modalities along with a description of the English version of “Universal Healthcare”—something to hear about on Election Day!
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Beads of Life
It took a medical crisis to turn my life around and help me find the work I was supposed to be doing. I call myself a beadsmith, meaning beads are the focus of my work. As an artist, I've worked in many creative medias over the years-- photography, painting, drawing, printmaking, ceramics, quilting and soft sculpture. Each was a new learning process and each one helped to hone my design skills and sense of color in order to ultimately design and create jewelry.
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Behind WHO LIVES?
Before this play, I had no connection to kidney disease, but it’s easy to empathize. Whether one has functioning kidneys or not, almost everyone grows up feeling different in some way—having “different” skin color, having a home or family life unlike other people, or perhaps not being smart enough, or talented in sports enough, or not good-looking enough. Remember the sinking feeling when two team captains would choose teams for dodge ball? I was never the first choice. We fill the vessels of our identity as being less than others. That’s an element in the play.
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Blood Soldiers (A Poem)
"still
straight ahead
the shadows fall on darkened soldiers
as I turn out the light
I glance back to tell them goodnight"
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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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By the Way...I Have Kidney Disease (Podcast)
Often compared to Nat King Cole, the famed Broadway star, Aaron Lee Battle is a spectacular and charismatic singer. Most would say he was “born to sing.” But not only is he a singer, he is also an actor, known for his critically acclaimed cabaret show, “Step Right Up.” Plus he dances too! And by way… he has kidney disease. Some would automatically throw in the towel and give up the showbiz life. Not Aaron. He continues to shine bright on stage in spite of…
Aaron strikes out to prove to the world that “kidney disease is not the end of life, and that you can go on and you CAN have a future.” Don’t miss this week’s inspiring show—you just might get a chance to hear why Aaron is considered the next Nat King Cole.
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Capt. Ardell Lien Makes History as the First Heart/Kidney Transplant Patient to Sail Solo Around the World
He set sail in his tiny craft on May 5, 2005, from San Diego, CA. During his epic solo voyage, he visited 19 ports, survived hurricanes, gales, tropical storms, and blistering heat.
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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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Celebrate the Day
Lastly, I celebrate the day. I cherish each day that I am feeling reasonably well, each occasion spent with my family and friends. I have parties every holiday, even the little ones like Cinco de Mayo or St. Patrick's Day. On the day after Thanksgiving, I cook again and call it Thanksgiving 2. I tell my family and friends that I love them each time I see them. I kiss my son awake each morning and put him to bed each night with a kiss.
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Celebrating 35 years and Counting (Podcast)
Are you old enough to remember Woodstock ? Do you know what you were doing the week of Woodstock (assuming you weren’t at the concert, that is)? A die-hard rock-n-roll fan, Charles Rosenberg remembers quite well. On KidneyTalk this week, Lori and Stephen visit with Charles, a living legend in the kidney community. In 1971 he received a cadaveric kidney transplant and has just celebrated his 35th anniversary. Listen in as Lori and Stephen discuss with Charles the ups, the downs, and the in-betweens on all the years of living with chronic kidney disease and transplantation. Lori also asks about an important piece of legislation regarding organ donation that has been enacted in New York thanks to Charles.
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Celebrities Speak About Kidney Disease (Podcast)
Keep It Hollywood of the National Kidney Foundation promotes kidney disease awareness by screening actors to find out if they are at risk. Hear what several of the actors had to say when they were screened. Hear from Ann Lopez who gave a kidney to her husband comedian George Lopez.
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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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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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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 Success (Podcast)
On this week’s show, Lori Hartwell and Stephen Furst talk with a spirited woman who embodies the wonders made possible by dialysis. The definition of “dialysis success” for this long-time kidney patient, Roanne Dale, is looking great and feeling great while on dialysis. While this might sound like an oxymoron, one look at Roanne proves that dialysis success is achievable. Roanne’s experience with kidney failure began back in the early 1970s. While on a tobogganing adventure with family members (for those of you from warm climates, a toboggan is a type of snow sled), her younger sister had a traumatic accident resulting in severe injuries. Because of the injuries, Roanne’s sister suffered kidney failure.
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Did You Know? Willem J. Kolff, MD, the Father of Dialysis
Willem J. Kolff, MD, the Father of Dialysis
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Did You Know? Belding Scribner, MD, the Father of Chronic Dialysis, Made History in 1960?
Belding Scribner, MD, the Father of Chronic Dialysis, Made History in 1960
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Did You Know? Nobel Prize Laureate Joseph E. Murray, MD, Performed the First Successful Kidney Transplant
Nobel Prize Laureate Joseph E. Murray, MD, Performed the First Successful Kidney Transplant
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Did You Know? Richard Bright, MD, Physician Extraordinary to the Queen, is Known as the 'Father of Nephrology'
Richard Bright, MD, Physician Extraordinary to the Queen, is Known as the ‘Father of Nephrology’
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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 Clown Around With Kidney Disease (Podcast)
Kathe LeBeau, Program Manager for RSN’s weKAN program, and a student in "Clown School," went in for gallbladder surgery only to discover that her kidneys had 50% of their function. She cancelled the surgery and began a journey of self-discovery by learning about the disease. Travel her amazing path with her and learn why Kathe opted for home hemodialysis. An exciting show that reminds us to live our lives as though we didn’t have kidney disease, but observe the guidelines!
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Family Ties (Podcast)
This week on KidneyTalk Lori and Stephen talk with Martinlow Spaulding, a kidney patient who juggles all of the above creatively and admirably. He hasn’t let kidney disease stop him from being a great husband to his loving and supportive wife Elaine, or Daddy to his six (yes, we said 6!) very active kids: Olivia, Andrew, Anna, Elizabeth, Emma, and Amy. He makes time for dates with his wife and each one of his children. On top of a hectic family schedule, Martinlow also is an active advocate for the Renal Support Network as well as his regional renal network (Network 9/10).
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Finding Alternative Solutions for Organ Donation: A Patient's Perspective (Podcast)
On this week’s show, Lori Hartwell and Stephen Furst speak with Sally Satel, MD--a psychiatrist, writer, and kidney transplant recipient--on the often controversial subject of organ donation. Dr. Satel (“Sally”) added fuel to the debate over organ donation when an article she wrote appeared in a recent edition of “The New York Times.” How do you feel about organ donation? Should the United States follow the lead of many European countries by adopting a policy of “presumed consent,” whereby a person is automatically considered an organ donor upon his/her death (unless otherwise noted)? Should we offer financial incentives for organ donors or keep the act of donation strictly altruistic?
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From Rome to Seattle: A Short History of Dialysis
The basic foundation of nephrology and dialysis goes back many centuries. As early as 100 AD, the citizens of Rome used their steaming hot baths to "sweat out" the toxins when urea began building up in their bodies. The real research in removing extra fluid and toxins from the body, however, may have begun with Richard Bright, MD, FRS, who was known as the "Father of Nephrology," and, later in life, was appointed Physician Extraordinary to Queen Victoria of England. Bright conducted early research on kidney disease during the first half of the 19th Century.
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Girls Just Want to Have Fun
How much fun do you allow into your life? Have you ever asked yourself that question? I have asked myself that question more than once. As I entered into my 40s, I decided things would be much different for me, but I had no idea how different.
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He Knows How It Feels (2002 Essay Contest - 3rd Place Tie)
Theme: "How the staff at your dialysis unit or transplant center encourages you to live a fulfilling life in spite of kidney disease"
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Hemo for Night-Owls (Podcast)
A kidney patient since she was 11, Diana Headlee-Bell has had two transplants and, since her second kidney transplant rejected, has been in in-center nocturnal hemodialysis 3 nights a week for 9 years. Why she likes it and how she manages it are two of the many questions Stephen and Lori ask. This alternative therapy modality can have many benefits. Listen to the show to find out what they are and –above all– discover another hemodialysis modality!
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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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Hope is Love
I encourage everyone diagnosed with any illness to actively get involved with his or her healthcare. The more you know, the better quality of life you can have. How well do you want to live? Ask questions. Search the web. Talk to other patients, and keep an open mind. Your life is what you make it.
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Hope Moments
Tomorrow represents opportunity. It’s another chance to have a “do over.” With tomorrow, I can make amends. With tomorrow, I can try it again. With tomorrow, maybe that laugh that I didn’t get to have today will come. With tomorrow, the possibilities are endless, and just thinking about those possibilities in that “hope moment” gives me what I need to press on. Go ahead… inhale!… exhale!... Are you getting it yet?
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Hope with a Harmony
When people have certain aspirations in life or hope to get through a condition like kidney failure, they may think of an important person in their lives or even a belief. For me, that aspiration is none of those. It’s the thing that is always there for me no matter what. The thing that can get me out of bed every morning: Music.
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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 a Firefighter Fought For His Kidney (Podcast)
After a career of 37 years in Fire Service saving other people’s lives and possessions -- Firefighter, Fire Marshall, and Chief of Emergency Services at a university-- John Garcia was locked in a battle with CKD for his own life. He didn’t have anything but flu symptoms when his doctor called up and said, “Get to the hospital, your kidneys are failing!” Listen to this latest KidneyTalk show podcast for the story of John’s heroic fight for his life, his experience with home hemodialysis, and the moving story about the roles his son and daughter played as caregiver and kidney donor. A very special KidneyTalk show!
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How Sweet Life Is! (Podcast)
Virna Elly a diabetic since the age of eight has had her shares of life's ups and downs. Her kidneys failed and she started dialysis. At one point she thought life was sour! Hear her remarkable story.
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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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I See. I Hear. (2002 Essay Contest - 1st Place)
Theme: "How the staff at your dialysis unit or transplant center encourages you to live a fulfilling life in spite of kidney disease"
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I Want More Dialysis...Please!
Many of my current dialysis patients as well as others around the United States are asking for more dialysis. They want to feel better and “get their lives back.” Allowing them to perform their own dialysis in the home setting and receive more total hours of dialysis is empowering. Patients have shared with me and I have witnessed how much better their lives can be when they receive the optimal amount of dialysis. So are you receiving optimal dialysis, or just adequate dialysis? This is a hot topic right now in the corporate kidney world, and should be among dialysis patients as well.
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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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Independent Living with Home Dialysis (Podcast)
What a great week to talk about home hemodialysis... the week of Independence Day. Our guest is Hasmik Mouradian, who knows about dialysis and the independence that home hemodialysis can offer. Hasmik began dialysis when only 16 years old. Not knowing what was wrong, her parents took her to the doctor because she had swollen legs. “The next thing I knew, I had to start dialysis,” says Hasmik, who was living in her native country of Armenia at the time
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It's a Hard Knock Life for Kidney Patients (Podcast)
How do you really feel about dialysis? This week’s guest, Bill Halcomb, a kidney patient, hates dialysis. He hates it so much, he named his website Ihatedialysis.com. The opposite side of the coin, however, is that he also has a website called IloveNxStage.com. He shares his thoughts about how he has learned to cope with the many challenges that he has faced. Check out KidneyTalk! this week and hear Lori, Stephen, and Bill discuss the pros and cons of dialysis, the emotions that come with dialysis, and the hope you can find when connecting with other kidney patients.
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It's Not The Pollyanna Attitude! (Podcast)
Holocaust survivor and famous Author, Viktor Frankl says; "...Everything can be taken from a man but one thing; the last of the human freedoms-to choose one's attitude in any given set of circumstances, to choose one's own way." It would seem Richard Redlin has made this a philosophy. At the young age of 22, Richard's promising life was changed forever. He became a paraplegic, and was told his life was over. Just as he managed to prove the world wrong, he was stricken with kidney disease, to put it lightly. That was 16 years ago. Richard Redlin is now an accomplished Certified Hypnotherapist, Health Coach, Speaker, Producer, Writer, Director, Actor, and the list goes on. Richard says he intends to, "change the perception of performers with disability, which is a weak one, to a powerful one, which is Producer / Writer / Director."
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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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Learn About Lupus (Podcast)
Did you know Lupus can lead to kidney disease? Wendy has taken on kidney disease, dialysis, and lupus with a positive attitude. In this show, she talks freely about her life and how chronic illness has affected her. She’s all about education. Listen in and educate yourself a little.
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Living Life as Job Did
Thomas Slater is a cancer survivor of 23 years. His mission is to share his miraculous story with those who need inspiration, motivation, and need to hear an empowering story.
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Living on Both Sides of the Knife (Podcast)
Can you imagine what it must be like as a transplant surgeon to undergo liver transplant surgery yourself? Probably as difficult as a doctor trying to imagine what kidney patients to go through just waiting for the results of their continual tests! Steven Woodle, M.D., transplant surgeon at the University of Cincinnati Hospitals, Department of Surgery, who “transplanted” Stephen Furst’s kidney, has been on both sides of the knife. A renowned surgeon and a leader in transplant surgery, Steve Woodle has a lot of wisdom and hope to offer those not sure about getting a kidney transplant. And just imagine what Stephen can do with this topic!
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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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Mr. Right and My Left Kidney
Finally, I decided to put the quest for Mr. Right on the back burner and pursue my first love, movies, at the 1993 Montreal World Film Festival. And there on a street corner I met John Katz, EdD. But it wasn't as serendipitous as it sounds.
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Mr. Right and My Left Kidney (Podcast)
Happy Valentine’s Day everyone! We have a great love story for you this week! We have two shows we are airing in honor of Valentine’s Day. The first one is this week’s show about finding love later in life. Next week, we will find out how Sweet Life Is! Joan Saltzman, author of Mr. Right and My Left Kidney, joins Lori and Stephen on KidneyTalk to discuss the juicy details of how she met her husband John, how they fell in love over the Phillies/Toronto World Series, how John’s kidney disease played a part in their new marriage, and how she made the decision to donate a kidney to him. Everyone say, “Ahh”.
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My 'I Can' Attitude Has Guided Me Through the Rough Time of Kidney Failure
I feel strongly about it and often say that "everyone has a story." This is usually followed by someone telling me how boring and mundane their lives have been. I used to be like that until I sat back and took a close look at my own life.
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My Experiences in a Renal Unit During the Vietnam War
During the past 40 years, vast improvements in dialysis techniques and practice have been made, greatly enhancing the management of acute and chronic renal failure. Further understanding of the pathogenetic mechanisms of acute renal failure has been achieved, and work still progresses in this field. However, to the present time, it remains clear that, when dealing with combat casualties, the aim of paramount importance must be the prevention of acute renal failure (ARF) rather than treatment of established, or chronic, renal failure.
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My Journey as a Peritoneal Dialysis Patient to a Normal Life
No doubt, like anyone else who deals with chronic illness, I wondered with amusement if I even knew what a “normal” life is anymore. How could I--with PKD and CKD that led to PD (as well as all those other mysterious combinations of medical letters)?
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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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My Triumphant Journey as a Documentary Film Maker (Despite Kidney Disease)
While quickly approaching my 25th year on dialysis, I wanted to write this article to let other chronic kidney disease (CKD) patients know that there is life after renal failure. While everyone is different, a person who follows an optimal dialysis prescription, controls his or her diet, and finds time to exercise can have a pretty good life, despite CKD.
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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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Not Just Another Day
I arrived at the hospital at about 5:00 a.m. on the day of the surgery. Phillip and I were side by side in the pre-operating room getting prepped for surgery. My surgeon was performing both ends of the operation, meaning he was both removing the kidney from Phillip's body and transplanting it into mine. That meant that they would get started on Phillip a couple hours before they brought me in. The last thing I remember is them telling me they were administering a drug into my IV to help me relax.
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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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Poem - Those Who Go, Those Who Stay
I wrote this poem in 1990 when someone asked me about my experiences during the Vietnam War. My daughter Shari then painted a picture for me using my poem as her inspiration. It has the same title and depicts a Vietnam veteran kneeling at “The Wall” memorial in Washington, D.C.
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Policing Kidney Disease (Podcast)
This week’s guest on KidneyTalk is Donald England, a full-time, on-the-beat police officer who is also a kidney patient. With an abdomen full of peritoneal dialysis fluid (he uses the CCPD cycler at night), Don patrols the streets of Kokomo, IN, keeping its citizens safe. Don shares his story of living a successful life, including managing kidney disease. Tune in and listen as Don talks with Lori and Stephen about his work as an active duty officer (he will be featured in an upcoming show on the FBI Files) and some of the important things kidney disease has taught him. You will be inspired by Don’s honesty, openness, and attitude about life!
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Sleep Apnea and Kidney Disease
Sleep apnea (SA) is a serious condition that is particularly important for patients with kidney disease to identify and understand. Complications include hypertension, heart attacks, strokes, and even sudden death. Just as importantly, SA affects individuals on a daily basis, causing fatigue, headaches, depression, and overall diminished executive functioning, which can lead to strains on interpersonal relationships and loss of productivity in daily endeavors.
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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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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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Stacey's Voice 'Sings in My Heart' (2005 Essay Contest - 3rd Place)
Theme: "That Special Someone"
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Stem Cell Research and Kidney Disease
Stem cell research is one of the hottest, controversial, and ethical topics on the medical and political fronts. While research on adult stem cells (ASCs) is proceeding apace, studies on embryonic stem cells (ESCs), which many scientists believe will yield more positive and lasting results, has been stymied by ethical, political and religious concerns. Nonetheless, the eventual application of stem cell research to ongoing clinical application seems destined to be a major revolution in the history of medicine.
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Surviving and Thriving with Kidney Disease (Podcast)
This week’s guest is a true survivor! Judy Weintraub has lived with chronic kidney disease for over forty years. Her story will amaze you and inspire you! Judy relates that kidney patients can live well while on dialysis. She began dialysis as a sophomore in high school in the mid-1970s. Judy has been successful in learning to cope with her chronic illness and she is greatly interested in helping others learn that same success. Tune in to your favorite online radio show and listen as Lori, Stephen, and Judy discuss what it takes to be a survivor living with kidney disease.
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Take Hold and Ride, Cowboy! (2004 Essay Contest - 2nd Place)
Theme: "TOUGH TIMES - A Memory or Dream That Gets Me Through"
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That Special Someone: My Daughter, Our Birthday (2005 Essay Contest - 1st Place)
Theme: "That Special Someone"
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The 'Chosen One': Bonnie Parks Markuson and Seattle's Life and Death Committee
Bonnie (Parks) Markuson has known something was wrong since she started wetting the bed in first grade. Her parents did everything imaginable to help her stop. They were told by the local doctor that she was lazy and just didn't want to get up.
Bonnie kept getting sicker with severe kidney and bladder infections. The doctor even took out her tonsils and adenoids in an attempt to stop the bedwetting. She spent most of her time sleeping and wondered why she didn't have the energy to play with other kids. When she was 12, the doctor again minimized Bonnie's illness.
"That's it," Bonnie's frustrated mom decided. "I'm taking her to the hospital!"
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The Big D
I occupy a mooring on Battleship Row. The row across from me is Sleepy Hollow. Between them lie the Pajama Islands, where the nurses and techs have their cabanas. The Hollow has most of the snoozers. I would like to think my row has most of the lively conversation, though sleep is an endless temptation--three hours in and one to go.
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The Broken Wing (2003 Essay Contest - 3rd Place)
Theme: "Kidney Disease - Redefining What is Important in Life"
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The Courage to Live
My doctors told me that my kidneys would function for about six more years. After that, I would either have to begin dialysis, have a transplant, or die. As a mother, this frightened me. My daughter was just a few weeks old, and my son was only four. I was terrified. I did not want to die and leave my children without a mother.
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The Dream That Gets Me Through (2004 Essay Contest - 3rd Place)
Theme: "TOUGH TIMES - A Memory or Dream That Gets Me Through"
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The Gifted People of Shoreline Dialysis (2002 Essay Contest - 2nd Place)
Theme: "How the staff at your dialysis unit or transplant center encourages you to live a fulfilling life in spite of kidney disease.
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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 Little Engine That Could: My Life as a Kidney Patient With Lupus
How would you describe your life? Has it turned out as you expected? Has life taught you some lessons along the way? These thoughts often cross my mind.
The diagnosis of lupus came in 1988 during my junior year of college. I was only 20. Systemic lupus is an autoimmune disease that causes the body's immune system to go a bit haywire, harming its own cells. Lupus can attack any of the vital organs. In my case, it attacked my kidneys.
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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 Name is McMaster...Jill McMaster (Podcast)
This week on KidneyTalk, Lori and Steven interview Jill McMaster, a former CIA agent and Navy Captain. She’s also a strong and dedicated advocate for Kidney Patients, as she presses on as a patient for the betterment of Kidney patients everywhere. She reveals to KidneyTalk an announcement from Congress that is guaranteed to rock the kidney community with elation. What was once illegal is no longer. Listen to this weeks exciting interview and learn how to be a part of this new revelation
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The Real Miracle of Family (2003 Essay Contest - 1st Place)
Theme: "Kidney Disease - Redefining What is Important in Life"
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The Surprise Gift of Life
What if our kidney disease gave the gift of life? I am a 35 year-old female from South Hadley, Massachusetts. I have been on dialysis for 18 months. At the beginning of January, I was scheduled to receive a kidney from a lifelong friend of mine. Instead, he received the gift of life from me!
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The Ultimate Adventure is the Infinite Day (2003 Essay Contest - 2nd Place)
Theme: "Kidney Disease - Redefining What is Important in Life"
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The Warmth of an Idea for Your Vascular Access
I was diagnosed in 1971, so I have known for years that kidney failure was probably in my future. I began hemodialysis in May of 2006. I have an upper arm AV fistula, and while on dialysis found that my access arm got uncomfortably cold. Those of you on hemo know that we can’t cover the access arm because the needle site has to be visible to staff at the center at all times.
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The “Cookie Lady”
How many cookies does it take to get from Hawaii to Denver, the site of 2004 annual Renal Support Network (RSN) National Patient Meeting? To find out the answer, we asked Marsha Hatakeyama, the official “cookie lady” and fellow member of weKAN.
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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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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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What is a Gurgling Space Machine? (Podcast)
That is the description that Bill Dant, a pioneer in kidney disease gives to his first dialysis machine, in August 1977. His first hand knowledge and attitude, in 3 decades of living with CKD has changed from denial to advocate and being chronically persistent. Listen and learn why he says that "Whether you live or die is your responsibility."
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What is Being Done to Increase the Supply of Donor Organs?
Mr. Undis has focused on a significant problem in the United States. The number of candidates on the deceased donor organ waiting list is increasing at a faster rate than the number of deceased organ donors. His solution is to change the organ allocation system so that those candidates who have indicated that they are organ donors for at least six months prior to their need for an organ go to the top of the waiting list, an "A" list so to speak. All others are in a second category, a "B" list. They would only receive an organ if there are any still remaining after the needs of the "A" list are addressed.
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Who Lives? (Podcast)
This week we return to the past to take a look at all the people who helped pave the way for us today in the kidney community. Lori and Stephen discuss the life-and-death committees of the 1960’s with Christopher Meeks, professor, playwright, and author of the play Who Shall Live? He has also written a book about the play. In the early 1960’s, dialysis became available to the public because of the development of the dialysis machine. The problem became apparent when the healthcare professionals realized there were more kidney patients than machines. What were they to do? To find out our humble beginnings, listen in as Lori, Stephen, and Christopher discuss medical ethics, special committees, and the worth of someone’s life.
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