News & Events
Discover new information and educational offerings that we provide. Explore our newsletters, blogs and upcoming webinars/conference calls.
Contents:
Chronic Kidney Disease and Hyperkalemia: What You Need to Know About High Potassium!
By Sue Hellie The challenges faced this past year have redefined what it means to live with chronic kidney disease (CKD). People living with kidney disease and other severe chronic conditions are at higher risk for more severe illness, and they’ve had to take extra precautions to ensure their safety and wellbeing. However, this past year has presented many people with the opportunity to educate themselves about their health and potential associated conditions that come with living with CKD. One condition that is less understood by many living with CKD is hyperkalemia. What is hyperkalemia? Hyperkalemia is a condition some people with CKD face that is characterized by elevated potassium levels in the blood. In [...]
Be Ready for Weather-Related Emergencies!
By Mike Guffey, DPC Board Member It is critically important for dialysis patients to be prepared for weather emergencies, especially as we head into the hurricane and winter weather seasons. Patients should have an emergency checklist and a “go” kit with emergency supplies. www.ready.gov is a good go-to site with checklists and contact cards to help your family be prepared. You should gather the information well in advance of any incidents, but it is helpful to review them at the start of each severe weather season. Maintain the kit in a sturdy plastic container and rotate supplies on a regular basis. Do not wait until the emergency occurs as some items may not [...]
Greetings from San Antonio Texas
By Natalie Zuniga, DPC Board Member, pictured here with her husband, Eddie Zuniga My name is Natalie Zuniga and I survived the 2021 Texas ice storm with my spouse, Eddie Zuniga, who is also a dialysis patient! I have been a dialysis patient for over three years and my husband has been a dialysis patient for eight years. At first, we thought it was a death sentence and we were not going to live much longer, and we gave up. But then, by hard work and education through Dialysis Patient Citizens and our nutritionist, Mary, we are now striving and enjoying life as seniors. We also are looking forward to bettering our lives [...]
Better Late than Never: Genetic Diagnosis After Major Medical Events
By Dawn Laney, MS You have two doctors for your kidneys, one for your heart, one for your head, one for your eyes, and one for your overall health. You are tested, biopsied, and imaged from head to toe on a regular basis. So, when one of these doctors suggests a referral to genetics, you may wonder, “Another doctor? Is it still worth seeking a genetic diagnosis as an adult who has already had kidney failure?” The answer is a resounding “Yes!” One way to improve care in a medically complicated situation is by learning if an underlying genetic condition could be playing a role in major medical event like early kidney disease. A diagnosis [...]
Why DPC Fights To Maintain Private Insurance Coverage for Dialysis
By Jackson Williams, DPC Vice President of Public Policy In recent years, private insurance coverage for dialysis patients has come under attack. In 2016, the outgoing Obama Administration issued a regulation that would have prohibited charities like the American Kidney Fund (AKF) from assisting patients with premiums. Several insurers unilaterally refused to accept checks from AKF or eliminated dialysis providers from their networks. Some employers have tried to restrict coverage for dialysis by amending their health plan language. The SEIU labor union promoted legislation and ballot initiatives, most notably in California, to restrict or eliminate insurance coverage for dialysis. DPC has been in the forefront of fighting off these attacks—in the courts, through lawsuits; bringing [...]
Polycystic Kidney Disease (PKD)
By Mirjana Dimitrijevic, M.D. and Keith A. Bellovich, DO There are two major forms of PKD: autosomal recessive polycystic kidney disease (ARPKD) and autosomal dominant polycystic kidney disease (ADPKD). ARPKD is uncommon and is typically diagnosed in infancy or in utero. Autosomal recessive means that the mutated gene must be present in both parents (carriers) with a 1 in 4 chance that a child will inherit an abnormal gene from both parents and have the disease. In ADPKD each child of an affected parent has a 50% chance of inheriting the disease. ADPKD is the most common inherited kidney disease, characterized by the development of multiple kidney cysts and associated with other organs involved beside [...]
Travel Lovers, Don’t Let Dialysis Slow You Down
By Vanessa Evans, Sr. Manager, Patient Communities and Advocacy at Fresenius Medical Care North America and DPC Board Member Brenda and Bernie Alvey are the consummate camper travelers, crisscrossing the United States and taking in sights from the St. Louis Arch to the Grand Canyon. But their camper has a few unusual features, including two recliners, extra outlets, and a homemade stand to accommodate Brenda’s portable home hemodialysis equipment. The Alveys have always loved traveling, but they thought their trips had come to an end when Brenda was diagnosed with Membranoproliferative Glomerulonephritis (MPGN), an autoimmune disease that destroys kidney function. Upon starting dialysis treatments in 2015, Brenda opted for home hemodialysis with the [...]
Hyperkalemia From a Dietitian’s Viewpoint
By Fanny Sung Whelan, MS, RDN Have you been diagnosed with hyperkalemia? Hyperkalemia refers to a medical condition that occurs when the potassium level in your blood gets too high [1]. “Hyper” means “over or beyond”, and “-kalemia” means “the presence of potassium in the blood.” Hyperkalemia is a common diagnosis, and luckily most people have mild cases that are well tolerated, but even mild cases need to be treated to prevent more serious cases from occurring. If left untreated and severe hyperkalemia develops, which is defined by blood potassium levels of 7 mEq/L or higher, cardiac arrest and death can occur [2]. Fortunately, there are treatment options to prevent this from happening. What causes [...]
Kidneys: Holy Grail Pursuit of Regenerative Medicine
By Anthony Atala, MD, Director, Wake Forest Institute for Regenerative Medicine Recently, two teams of scientists from the Wake Forest Institute for Regenerative Medicine (WFIRM) won first and second place in NASA's Vascular Tissue Challenge, a prize competition that aims to accelerate tissue-engineering innovations. Vascularization of engineered solid organs – like the kidney – is part of the Holy Grail pursuit of regenerative medicine. Being able to create organs with the needed blood vessel structure means the organs are supplied with needed nutrients and oxygen to survive when implanted. The two Wake Forest teams both used 3D bioprinting technology to create liver tissue constructs that were vascularized and able to mimic the human liver function [...]
H.R. 1676 – The Jack Reynolds Memorial Medigap Expansion Act
By Megan Hashbarger, Vice President of Government Relations Earlier this year, The Jack Reynolds Memorial Medigap Expansion Act (H.R. 1676) was reintroduced by Congresswoman Cynthia Axne (D-IA-03) to ensure all End Stage Renal Disease (ESRD) patients have access to Medigap. This Congress, we were very pleased she was joined by Congresswoman Jaime Herrera Beutler (R-WA-03) in leading this effort. Ensuring all ESRD patients have access to Medigap is extremely important to help patients cover the high costs of care and to improve their access to transplantation. Medigap policies are standardized, private insurance policies that cover costs not covered by Medicare, such as copayments and deductibles. Current federal law does not specify that all Medicare beneficiaries, [...]
The Kidney Citizen Issue 14
Better Late than Never: Genetic Diagnosis After Major Medical Events, Chronic Kidney Disease and Hyperkalemia, DPC's New Report Card on Medigap Coverage, and more!
Improving Equity in Dialysis Treatments and Transplants
Earlier this month the U.S. Department of Health & Human Services (HHS) announced that it is seeking comments on future rulemaking to support the President’s executive orders to advance health equity and improve health outcomes for people in need of dialysis treatment and transplants. HHS Secretary, Xavier Becerra stated, “We want to hear from diverse stakeholders, especially the patients and their families. Your feedback is essential to our work in ensuring equal access to vital resources.” HHS acknowledged that both Black and Latino individuals are more likely to have kidney failure than white individuals in the United States (almost 4 times and 1.3 times, respectively), and are less likely to be placed on the transplant [...]
Finding Your Voice – The Importance of Advocacy
Including the patient voice in healthcare is something that most people don’t have to think about. You realize how essential it is though if you are sick - something that Christina Fuhrman experienced firsthand when she got an infection. After being in the hospital for seven months, her doctor thought that the best course of treatment would be to remove her colon; however, Christina was worried about the impact on her quality of life. By doing her own research, she learned about another, possibly risky, treatment and decided to seek a second opinion when her doctor said she did not have the option for the riskier treatment. Feeling betrayed by the system put in place [...]
Understanding Depression Throughout Your Life
As people grow and change throughout the different stage of their lives, so do their signs of depression. The commonly thought of signs, such as feeling sad or hopeless, can appear in people experiencing depression in every age group, but there are additional signs to lookout for in family and loved ones. Children – some tell-tale signs in children can be a loss of interest in previously loved activities, difficulty with family members, problems at school (including socializing), and changes in diet or weight. Teenagers – teens may exhibit the same signs as children, but more unique to this age group are prolonged mood changes, lashing out, problems with friends, sleeping or eating too much, [...]
Transplant Patients Could Have a New Type of Donor in the Future
During a surgery that took place in September 2021 at NYU Langone Health in New York City, a kidney that was grown in a genetically altered pig was transplanted into a human patient. The patient, who was brain dead and who’s family consented to the surgery, had the kidney attached to the blood vessels in the upper leg outside of the abdomen. It quickly began functioning normally and the entire procedure went better than expected. Although the patient was only followed for 54 hours post-surgery and the research behind the procedure has not been peer-reviewed or published in a medical journal, the results suggest that this could lead to a new source for transplant organs. [...]
COVID-19 Vaccines for Immunocompromised People
As the COVID-19 pandemic continues, ongoing studies help inform healthcare professionals about the different immune responses and reactions among various groups within the population. Data has shown that people who are moderately to severely immunocompromised are especially vulnerable to the virus due to the inability to build the same level of immunity after vaccination as non-immunocompromised people. Small studies have also found that immunocompromised people made up a large portion of breakthrough cases requiring hospitalization, suggesting they could be more likely to transmit COVID-19 to other members of their household. Given this information, the CDC recommends that moderately to severely immunocompromised people receive an additional dose of mRNA COVID-19 vaccine at least 28 days after [...]
DPC Education Center to Become a Member of the TAQIL Leadership Coordinating Council with HSAG
In September, The DPC Education Center signed a letter of commitment to become a member of the TAQIL Leadership Coordinating Council with the Health Services Advisory Group (HSAG) which had been awarded the CMS Technical Assistance, Quality Improvement, and Learning (TAQIL) Contract. As a member of the Council, we agree to support their efforts to increase recovery of kidneys by organ procurement organizations and utilization of kidneys by transplant centers. This includes the aims of increasing deceased donor transplants and reducing kidney discard rate. The Dialysis Patient Citizens Education Center recognizes the importance of all parties working together to improve the quality of care patients receive and looks forward to being a part of this [...]
Sifting Through the Many Options for Integrative Chronic Pain Treatment
For the more than 50 million Americans who experience chronic pain every day, trying to create a treatment plan can be an exhausting battle. Due to the complex nature and differences in individuals’ pain, it is usually most effect to have an integrated or multidisciplinary treatment plan, which is the use of different methods of treatments together in order to manage/reduce pain. Although there are a wide range of integrated treatments that exist, multidisciplinary specialists are hard to come by, causing most of the research to fall onto the patient. While it is still important to work closely with your doctor and healthcare team about the best course of treatment, below are some multidisciplinary care [...]
We’re Masking Up Again, But is a Cloth Mask Good Enough?
During the start of the pandemic, when both surgical masks and N95s were in short supply, cloth masks began to make an appearance. Even when the supply of disposable masks began to improve and were more widely available to the public again, cloth masks continued to grow in popularity due to their ability to be personalized to the wearer. Like a certain sports team? You could find a mask with their logo. Want everyone to know your affinity for gardening? Wear a mask printed with different plants and flowers on it. Now that we are having to mask back up due to the Delta variant though, many people are asking, how effective are cloth masks, [...]
Understanding the New Talk Around “Booster Shots”
You may have heard the term a third dose or a booster shot for the COVID19 vaccine. To clarify, The CDC had already approved a third dose of the Pfizer-BioNTech COVID-19 vaccine or Moderna COVID-19 vaccine for people with moderately to severely compromised immune systems. This includes people who have received an organ transplant and are taking medication to suppress their immune system. Learn more about receiving a third dose at: https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations/immuno.html. Now, the CDC has approved a booster shot for both certain populations and for people who work in high risk work settings who have received the two-dose Pfizer-BioNTech COVID-19 vaccine. This includes : people 65 years and older and residents in long-term care settings should receive a [...]
