News & Events
Discover new information and educational offerings that we provide. Explore our newsletters, blogs and upcoming webinars/conference calls.
Contents:
Building Legacy Through Advocacy
By Yolonda Brisbane, DPC Grassroots Manager As the Grassroots Manager for Dialysis Patients Citizens (DPC) Yolonda recruits and coaches new DPC patient advocates, helps plan and execute our Annual Advocacy Day, and hosts Patient Ambassador training calls. She came to DPC having led youth ambassador programs for the New York State Office of Children and Family Services and the Boys and Girls Clubs of America. For her, elevating the voices of dialysis patients is personal work. "When I was fourteen, I lost my father to kidney failure when he refused to go on dialysis. I had no clue about what dialysis was. Years later, my mother had to go on dialysis. My brother [...]
Supreme Court Erases Kidney Patients’ Insurance Protections
By Megan Hashbarger, DPC Vice President of Government Relations and Jackson Williams, DPC Vice President of Public Policy A U.S. Supreme Court ruling has nullified the law that protects dialysis patients from discrimination by insurers, threatening the system of financing kidney care that has stood for 40 years. The Court ruled that employer health plans may limit dialysis benefits. For four decades, employers understood the law as prohibiting limitations that only applied to dialysis. Some health benefit consultants encouraged a few small employers to disregard the law by paying no more than Medicare rates for dialysis. DaVita sued them, and one of the cases was appealed to the Supreme Court. The [...]
The Social Worker – Patient Relationship: One Social Worker’s Reflections
By Jean Carosella, LCSW In April 2021, I retired from dialysis social work after working in the same clinic for almost 44 years. I had actually planned to retire a year earlier but the pandemic played a major role in my staying on another year. I just couldn’t leave knowing the stress and worry that COVID was creating for everyone in the clinic, patients and staff alike. But now a year into retirement, I can see one positive outcome for me as a result of the pandemic. COVID forced me to slow down and take the time to reflect on what my role as a dialysis social worker has meant to me. I [...]
Anemia in People with Chronic Kidney Disease
By Jay Wish, MD Anemia is defined as a lower-than-normal level of hemoglobin in the blood. Hemoglobin is the protein in red blood cells that carries oxygen to all tissues and allows those tissues to carry on their functions, including the creation of building blocks for energy. Hemoglobin is what makes red blood cells red, and this explains why people with low hemoglobin levels may appear pale. Hemoglobin levels less than 13 in men and less than 12 in women is considered anemia. Anemia is common in people with chronic kidney disease (CKD) and may have many causes. It is estimated that 15.4% of people with CKD (stages 1-5) have anemia, compared to [...]
Navigating a Renal Diet: Decoding the Mystery
By Fanny Sung Whelan, MS, RDN, LDN How to navigate a renal diet based on your kidneys’ needs No matter what stage of kidney disease you’re in, all of the different diet recommendations can cause your head to spin. Pair it with other conditions you may have, and you’ve got a real recipe for confusion! So how can you sort out all of the differences in what you can and can’t eat? Here we are going to outline the diet guidelines for the different stages of kidney disease. Disclaimer: it is important to discuss any diet changes with your health care team before you proceed. Everyone’s needs will differ based on the individual. [...]
Conquering Dialysis Fatigue
By Patricia McCarley, RN, MSN, ACNP and Felicia Speed, PhD, LMSW Patients on dialysis may complain of an intense feeling of tiredness or fatigue with 60-97% of patients finding it as important a health outcome as mobility or pain. While it may be difficult to identify the exact cause, patients with chronic kidney disease (CKD) or end stage renal disease (ESRD) have several factors contributing to fatigue, including uremia, an increased level of waste products in the blood, and anemia, a decrease in red blood cell production. Anemia is a condition in which your body does not produce enough red blood cells to carry oxygen throughout the body. Fatigue is one [...]
Advanced Care Planning: Turning “What If?” Into “Here’s How”
By David L. Mahoney, MD, FASN, FASDIN A number of years ago, I attended a lecture on Advance Care Planning. The speaker was a very engaging man who had recently dealt with end-of-life issues for a loved one. There were about 150 people in attendance at the lecture, which began with a series of questions: “How many of you have life insurance?” Virtually every hand in the room went up. “How many of you have a will?” About three quarters of the hands were raised. “How many of you have a living will?” About 10% of hands were raised in response to this question. I think that this illustrates the fact that we [...]
Telehealth with a Behavioral Health Professional: What to Know Before You Start
By Kirsten Weir If you or a family member is managing chronic kidney disease, you’re probably thinking a lot about physical health—the health of the kidney and the rest of the body. Caring for your behavioral health is just as important. And with telehealth options that let you see a behavioral health professional from your home, it’s more convenient than ever. “The increased availability and acceptance of telehealth might be one of the few positive changes to come out of the [COVID-19] pandemic,” says Amy Walters, PhD, a clinical health psychologist and the director of Behavioral Health Services for St. Luke's Humphreys Diabetes Center. There are very good reasons to establish care with a [...]
The Kidney Citizen Issue 16
Telehealth with a Behavior Health Professional, Navigating a Renal Diet, Anemia, and more!
Digital Health Records – You can now access them, but not easily
On October 6, 2022, new federal rules took effect that require health care organizations to give patients unrestricted access to their digital health records. These rules that were passed under the 21st Century Cares Act are designed to empower patients by not only giving them the ability to access their own data, but also decide who to share that data with, which was previously not the case. This means that patients can better understand their care, shop for services, and engage in their own research. It also removes roadblocks such as fees and delays that were the norm for patients requesting their medical records before, despite HIPAA requirements providers turn over records when patients ask [...]
Recipe of the Month: Spider Cheeseball
Get a brand new, kidney-friendly recipe* delivered to your inbox each month, courtesy of Jessianna Saville, MS, RDN, CSR, LD, CLT, a member of the Ed Center Advisory Council and Founder & CEO of the Kidney Nutrition Institute. October’s recipe is perfect for a Halloween get together, or just anytime you’re craving some cheese (disguised as a spooky spider or not!): Spider Cheeseball Recipe create by Jessianna Saville, MS, RDN, CSR, LD Ingredients: Makes 16 servings 1 8 oz package, softened cream cheese (Check your packages carefully. Lowfat is not always the lowest in sodium.) 2 oz feta cheese crumbled 2 tablespoons olive oil 2 cloves garlic minced (If you love garlic, we actually did 3 garlic cloves and it tasted fantastic.) 1 teaspoon dried oregano [...]
Organ Transplants Are Up, but the Agency in Charge Is Under Fire
By Blake Farmer, Nashville Public Radio September 7, 2022 For the past decade, Precious McCowan’s life has revolved around organ transplants. She’s a doctoral candidate studying human behavior in Dallas who has survived two kidney transplants. And in the midst of her end-stage renal disease, her 2-year-old son died. She chose to donate his organs in hopes they would save a life. Now her kidney function is failing again, and she’s facing the possibility of needing a third transplant. But the process of finding that lifesaving organ is rife with problems. Roughly 5,000 patients a year are dying on the waitlist — even as perfectly good donated organs end up in the trash. The agency that oversees donations [...]
New Study Shows Age-Related Kidney Function Differs by Gender
A study of 1,837 people aged 50-62, which replicated accurate measurements of kidney function in health women and men over time, may partly explain why more women are diagnosed with early CKD and more men develop severe CKD and kidney failure as they age. The baseline mean glomerular filtration rate (GFR) was 90 ml/min/1.73 m.2 for women and 98 ml/min/1.73m.2 for men (P<0.001). However, additional measurements over 11 years of follow-up showed that men experienced a mean decrease in GFR 25% more than women. The study, published in Journal of the American Society of Nephrology (JSN) showed that the relationship between age and GFR was about linear in women, but curvilinear in men, with [...]
Recipe of the Month: Baked Apples with Crumble Topping
Welcome to our new article series, Recipe of the Month! Get a brand new, kidney-friendly recipe* delivered to your inbox each month, courtesy of Jessianna Saville, MS, RDN, CSR, LD, CLT, a member of the Ed Center Advisory Council and Founder & CEO of the Kidney Nutrition Institute. For September, we have a great recipe to get you in the mood for autumn: Baked Apples with Crumble Topping Recipe created by The KidneyRD Team Ingredients: Makes 4 servings 3 tablespoons coconut oil cold and firm 2 tablespoons all purpose flour 2 tablespoons brown sugar packed ¼ cup rolled oats ¼ cup chopped walnuts ¼ teaspoon ground cinnamon or up to ½ teaspoon for stronger flavor 1 dash of salt 2 apples A splash of lemon juice Optional topping: sweetened whipped coconut [...]
COVID-19 Transmission and Understanding Exposure Risks
The Centers for Disease Control and Prevention (CDC) has created a series of questions around factors that can determine a lower or higher risk of COVID-19 transmission. These questions are designed so you can assess your risk of exposure and possible transmission in various settings, as well as the likelihood that you were infected if you had recently been around a person with COVID-19. If multiple factors indicate you could be in a higher transmission risk scenario, you may consider adding more preventative actions or take steps outlined for what to do if you were exposed. As always, you should consult with your healthcare team to make sure you are taking the recommended precautions [...]
World’s First HIV-Positive to HIV-Positive Heart Transplant Performed
Earlier this spring, a woman in her 60s became the first to receive an HIV-positive to HIV-positive heart transplant. She suffered from advanced heart failure and received the donation, which happened simultaneously with a kidney transplant, during a four-hour surgery at Montefiore Health System in the Bronx. The woman spent five weeks recovering in the hospital and is currently being monitored by transplant physicians at Montefiore. In 2013, the HIV Organ Policy Equality Act enabled people living with HIV to donate their organs to HIV-positive recipients, but this is the first time this opportunity has been able to happen for heart transplantation. Montefiore is one of just 25 centers in the U.S. that is able [...]
Will the COVID-19 Pandemic Ever End?
By Alan S. Kliger, MD, Clinical Professor of Medicine, Yale School of Medicine, and Chair, Excellence in Patient Care Advisory Committee, American Society of Nephrology Updated October 2022 Some recent quotes I’ve heard - - - I’ll bet you have too: “Who can even pay attention when the subject of COVID-19 is raised?” “Enough already – I’m through with it” “What’s the difference? Even with vaccines and boosters, I still got COVID twice!” After nearly three years of this pandemic, COVID-19 infection has gone from a frightening and deadly disease to a major disruptor of our lives, to annoying background noise for most of us. And yet, the emergence of the Omicron [...]
The New 988 Suicide & Crisis Lifeline Has Launched
As of July 16th, people experiencing a mental health crisis (or their family and friends) can call or text 9-8-8 to reach help. The new 988 Suicide & Crisis Lifeline is modeled after 911 in order be easier to remember and provide a quick way for those in crisis to connect to a trained mental health professional, 24/7. The Lifeline is a national network of over 200 local crisis centers, providing free and confidential emotional support, along with connection to local resources, if necessary. When calling into the Lifeline, you will: First hear an automated message – this will outline additional options while you call is routed to your local network crisis center. Hear some [...]
Finding Your Balance Could Lower Your Risk of Death
A new study out of Brazil shows that being able to stand on one leg for at least 10 seconds is linked to having a lower risk of death over the next seven years. Researchers have found that people who were middle-aged or older who could not perform the 10-second standing test were almost four times as likely to die of any cause in the coming years. While it has been known that falls are a major cause of injury and death worldwide, this new study has shed light on falls not being the only problem of having poor balance. Improving nonaerobic fitness (balance, flexibility, and muscle strength) can help mitigate not only falls, but [...]
Just how accurate are rapid antigen tests? Two testing experts explain the latest data
Once in short supply, rapid antigen tests are now available throughout the U.S. Nathaniel Hafer, UMass Chan Medical School and Apurv Soni, UMass Chan Medical School As of May 2022, the U.S. is experiencing another uptick in the number of COVID-19 cases. High rates of infection in Europe and Asia, along with the continued emergence of new sub-variants, such as omicron BA.4 and BA.5, raise concerns that another surge could be on the way. Even though demand for COVID-19 tests greatly overwhelmed supply earlier in the pandemic, rapid home tests are more available today. While home tests provide a quick, accurate result, the flip side is that many test results are no longer reported [...]
