News & Events
Discover new information and educational offerings that we provide. Explore our newsletters, blogs and upcoming webinars/conference calls.
Contents:
My Experience Working During the COVID-19 Pandemic While Living With A Kidney Transplant
By Merida Bourjolly, DPC Education Center President ANXIETY OF COMING BACK I am sure everyone has felt the impact of the COVID-19 Pandemic. This is the first time I have experienced a complete shut down in my industry due to a virus. Additionally, the lockdown provided an opportunity for a pause and a chance to rethink my priorities and what is meaningful. From a financial perspective, this shut down taught me how to adapt to uncertain economic times. I am really grateful for technology that helped us connect virtually, provided an opportunity to work, and to make it through a stressful time. Sustaining a business without revenue is not the only financial undertaking I faced; [...]
Cystinosis: A Rare and Under-Recognized Cause of Kidney Failure
By Ladan Golestaneh, MD, MS What is Cystinosis? Cystinosis, or Nephropathic Cystinosis, is a rare genetic disease that affects boys and girls equally and causes a defect in the way that lysosomes (small organelles in cells that remove waste products) are able to remove an amino acid (protein subunit) called Cystine.1-4 The name of the defected gene is CTNS which affects “Cystinosin”, the protein that normally takes Cystine out of the lysosome. As a result of this defect, Cystine accumulates in the cells of various organs and tissues of the body and causes extensive damage. The disease is progressive, meaning it gets worse with time.3 Cystinosis is passed down to affected individuals through an autosomal [...]
Join Us by Telephone for Our New Program!
By Kathi Niccum, EdD, Education Director In March we launched our first Patient Support Group meeting by telephone. Having a support group has been one of our goals for years and we are happy to announce it is now a reality. We chose to have the group meet by phone instead of online in a Zoom meeting because we think most people use the telephone. And we want the support group to be available to all patients at any stage of kidney disease and to their families. On the second Tuesday of each month, at 3:00 pm Eastern, you can join in the conversation or just listen during the one-hour meeting. The facilitator for the [...]
DPC’s State Advocacy Program Works to Advance State Policies that Improve Dialysis Patient Outcomes
By Kelly Goss, J.D., LL.M., Western Region Advocacy Director Historically, health policy issues that impact End Stage Renal Disease (ESRD) patients have largely been focused at the federal level since the vast majority of ESRD patients are on Medicare, a federally-run health insurance program, as their primary insurer. Hence, much of the decision-making with regard to ESRD policies has come either from Congress or from within the U.S. Department of Health and Human Services (HHS) since both have oversight of the Medicare program. However, in recent years, states have become more actively engaged in health policy legislation, in large part due to their expanded role in the development and implementation of the state health care [...]
How to Prepare Your Child for a Hospitalization
By Shani Thornton, MS, CCLS, RWWP When your child has a chronic illness, hospitalizations and urgent care visits may become more frequent. Feeling prepared for these medical admissions can help ease anxiety and fear. Here are a few tips to help create a plan for your family. Emergency Visit Pack a bag that can easily be accessed during a medical crisis. The emergency go-bag should include extra clothes, comfort items, small toys, activities, snacks, phone charger, medical records, emergency contacts, pen and paper. Many families leave their go-bag in their car or have a specific location within their home. It can also be helpful to leave a reminder note to grab items that may not [...]
New Organ Transplant Guideline Promotes Patient Safety, Organ Availability
By Sridhar Basavaraju, MD, FACEP, CDR-USPHS and Heather Ewing Ogle, MA, MPH In the United States, there are approximately 90,000 patients with end-stage renal disease waiting for a transplant. For those patients, a kidney transplant could substantially improve their quality of life. Unfortunately, an organ offer may not be available for every patient in need because of the length of the waiting list. With guidance from the Centers for Disease Control and Prevention (CDC), the U.S. Public Health Service released a new guideline in 2020 that may increase the number of available organs for those in need of a transplant. The recommendations in the new guideline reflect recent improvements to organ donor screening technology for [...]
The COVID-19 Vaccine is Finally Here. Learn How to Manage Anxiety and Impatience While You Wait
By Kirsten Weir It’s been a long and stressful pandemic year. Now that COVID-19 vaccines are becoming available, many people are wrestling with a new burst of emotions: From fear and skepticism to excitement and impatience. “There is such a range of emotions around the vaccine rollout,” says Elizabeth Christofferson, PhD, a pediatric psychologist and clinical director of transplant psychology at Children’s Hospital of Colorado and an assistant professor at the University of Colorado School of Medicine. “Those emotions are normal and valid — and you can find ways to cope with them.” Easing Concerns About the Vaccine Guidelines from the U.S. Centers for Disease Control and Prevention recommend that patients over the age of [...]
The Kidney Citizen Issue 13
Dialysis Patients and COVID 19: Should I get the Vaccine?, How to Prepare your Child for a Hospitalization, New Organ Transplant Guideline, and more!
So, You’ve Been Vaccinated. Now What?
First of all, congratulations! It has been a long and difficult year for everyone, and finally having some protection against COVID-19 feels good. We still have a ways to go though, and since we are still learning about how the vaccines will affect the spread of the virus, it is important that everyone one keeps taking precautions – such as wearing a mask, staying 6 feet apart from others, and avoiding crowds or poorly ventilated indoor spaces. The CDC has also provided some recommendations to help with decision making in daily activities for people who have been vaccinated. The first thing to consider is if you have been fully vaccinated. People are only considered fully [...]
Fabry Awareness Month
April is Fabry Awareness Month, which brings attention to a rare disease that affects about 1 in 100,000 people. So, what is it? Fabry is an inherited genetic condition, caused by a mutation on the X chromosome in the GLA gene that leads to reduced levels of the enzyme alpha-galactosidase A (AGA) in the body. This means that the body cannot break down a certain type of fat, called globotriaosylceramide (GL-3), which then continues to build-up in a way that causes the blood vessels all over the body to become narrowed. This causes damage to tissues and organs, including your kidneys! It affects both men and women, and there are two main forms of Fabry [...]
Healthy Lifestyle May Lower Death and Major Adverse Cardiac Events Risk in Kidney Patients
It is no secret that doctors advise all their patients to live a healthy lifestyle; eating well, including making sure to get the recommended daily nutrients for your diet, regular exercise, getting enough sleep, managing stress, and not smoking are beneficial for everyone. However, this is particularly important for patients living with CKD, as they are 10 times more at risk for cardiovascular disease compared with the general public. A new study, published in the Journal of the American Society of Nephrology, has shown that adhering to generally recommended healthy lifestyle choices may lower the risk of death and major adverse cardiac events (MACE) for CDK patients. Adhering to five lifestyle behaviors – having not [...]
Podcast: The Elephant in the Room – Fear & Uncertainty During COVID-19
At the end of last year, dialysis patients were invited to submit their questions about real-life issues during COVID-19. In this first episode of the new podcast, The Elephant in the Room, experts respond to patients’ letters, including Dale Lupu from George Washington School of Nursing, Liz Anderson, a long-time social worker (both of whom were presenters for the Ed Center’s January 2021 webinar), and a kidney patient with “lived experience” John Brandon Bayton, Jr. You can listen to the first episode of the podcast on Buzzsprout here: https://www.buzzsprout.com/1642372/7476073-episode-1-fear-uncertainty-during-covid-19
March is National Kidney Month!
Your kidneys work hard for you all year long, but this month we give them a little extra recognition and raise awareness about kidney disease for National Kidney Month. This year’s theme is all about taking charge of your health and what goes into managing your kidney disease. Chronic kidney disease (CKD) is a serious condition that affects 37 million people; however, it is often overlooked until symptoms appear. This can put you at risk for serious health complications, including kidney failure, so it is important to know the ways to help manage and slow the progression of CKD. Take charge of your kidney health by following these healthy lifestyle tips: Meet with your doctor [...]
Join Us for Our New Patient Support Group!
In March we will be launching our first Patient Support Group meeting by telephone. Having a support group has been one of our goals for years and we are happy to announce it is now a reality. We chose to have the group meet by phone instead of online or in a Zoom meeting because we think most everyone has a phone. And we want the support group to be available to all patients at any stage of kidney disease and to their families. On the second Tuesday of each month, at 3:00 pm Eastern, you can call and join in the conversation or just listen during the one-hour meeting. The facilitator for the group [...]
Dialysis Patients and COVID-19: Should I get the vaccine? If I get the virus, should I take the antibody treatment?
Written by: Alan S. Kliger, M.D., Clinical Professor of Medicine, Yale School of Medicine, and Co-Chair, American Society of Nephrology (ASN) COVID-19 Response Team. As 2021 unfolds, the COVID-19 pandemic continues. Dialysis patients continue to isolate at home, socially distance from family and friends, use face coverings and precautions traveling to dialysis and in the unit. How will this pandemic end? Many patients have important questions about the new vaccines and about new treatments for the infection. First, some facts about the vaccines: What is a vaccine? An injected vaccine is designed to stimulate your immune system to produce antibodies that attack and kill the virus invading your body. Our immune systems help defend us [...]
Heart Health and How it Impacts Our Kidneys
While February is usually associated with hearts for Valentine’s Day, it is also American Heart Month, where Americans are encouraged to adopt healthy lifestyle choices in order to prevent heart disease. The heart and the kidneys work closely together, so when one isn’t healthy, it can have an impact on the other. If you have kidney disease, you also are more likely to have heart disease. So, what are some ways you can help your heart thrive as a kidney patient? Eat a heart-healthy diet (think fruits and vegetables, high quality proteins, and avoiding foods that contain high levels of sodium, phosphorus, or potassium). Manage high cholesterol Get at least 30 minutes of physical activity [...]
Black History Month and Kidney Health Disparities
As many people know, February is Black History Month, and it is important that we take the time to reflect upon, commemorate, and celebrate all the incredible achievements made by African Americans and the impact they have had on the history of the United States. What many do not know though, is the disparity with which kidney disease and illness affects the black community. African Americans comprise approximately 13% of the United States’ population; however, they make up more than 35% of all patients on dialysis due to kidney failure. Additionally, about 4.9 million African Americans over the age of 20 are living with either diagnosed or undiagnosed diabetes. While that may not seem related, [...]
DPC Education Center Board of Directors Elect New President
Merida Bourjolly was elected as the new president for the DPC Education Center by its Board of Directors, effective immediately. Bourjolly has served as a DPC Education Center Board Member since 2018. “It is a privilege to be selected as DPC Education Center's Board President. I want to thank Nancy Scott for her incredible service as the DPC Education Center's President since it was founded in 2012. I look forward to continuing to work to educate and improve patients' lives in this new role,” said Bourjolly. In addition to Bourjolly's new role as DPC Education Center President, Pius Murray was elected as DPC Education Center Vice President. Get to know the DPC Education Center's Board [...]
Get Active in the New Year
With 2020 behind us, now is the time to plan your resolutions for 2021. Exercise has been shown to positively impact renal function among peritoneal dialysis patients, and the DPC Ed Center has a free course to help you set and reach your exercise goals. This course explains why exercise is important, how it benefits people living with kidney disease and how you can develop a personalized exercise program that will work for you. By the end of this course, you will be able to: Identify the four components of a well-balanced exercise program Develop a personalized exercise program Identify some motivators for you to exercise Take the first steps to begin your exercise routine [...]
“You Want to Slit My Throat?”: What is a Parathyroidectomy?
By Keith A. Bellovich, DO and Mirjana Dimitrijevic, MD Parathyroidectomy is the surgical removal of one or more of your parathyroid glands. It stems from the Greek ektomia = "cutting out" which means to surgically remove something from your body. The parathyroid glands are made of tissue slightly larger than a single grain of rice, located around your Adam’s apple that produce parathyroid hormone (PTH) and control the levels of calcium in your body. PTH stimulates the conversion of calcidiol (25-hydroxyvitamin D) to calcitriol (activated vitamin D) within kidney tubular cells, which leads to the absorption of calcium in your diet from your small intestines. Most people have four parathyroid glands. Supernumerary (more than four) [...]
