News & Events
Discover new information and educational offerings that we provide. Explore our newsletters, blogs and upcoming webinars/conference calls.
Contents:
My Personal Experience with a Rare Condition
By Mark Scirocco, Patient Ambassador I have been on in-center hemodialysis for three years. It was a rough start, as I went through 11 chest catheters in a little over a year. Two of them just fell out while I was sitting at home; the others got clogged. The last one almost killed me, stopping fluid in my upper body and head. My fistula was barely ready when they took that one out and placed a stent in my chest to allow fluid past my upper body. Three months after starting my fistula, I needed a fistulogram to open it up. For those of you who have not heard of a fistulogram, it is a [...]
Maintaining Personal Relationships While on Dialysis
By Alex Purcell People with end-stage renal disease (ESRD) who have gone through dialysis can tell you that it is exhausting—and so can their loved ones. Not only does dialysis take a physical toll on the patient, it can also put significant stress on the patient’s relationships with their friends and family, right when they need those relationships the most. This dynamic can be especially complicated if the primary caregiver is a spouse or close relative. If you’re in this situation, as either a patient or a loved one, you may be feeling frustrated, sad or lonely. But there’s hope: transplant psychologists say that you can learn to maintain and potentially enrich your close relationships [...]
Free Monthly Webinars/Conference Calls
The DPC Education Center invites people living with chronic kidney disease (CKD), end-stage renal disease (ESRD), their families and professional staff to join us for our monthly webinars. You can also join by phone or view the recordings online at a later time. The webinars are planned for the fourth Thursday of the month at 2 p.m. Eastern time zone, except for November and December when they will be held during the third week of the month. You can download monthly webinar fliers to share with others and/or register for webinars at www.dpcedcenter.org/news-events/education-webinars. Join by phone by calling 1-877- 399-5186 and entering meeting code 433 459 5474. Although we are still finalizing some of the [...]
Kidney Community Blocks Threats to Charitable Assistance and Dialysis Funding in California
By Megan Hashbarger, Director of Congressional and State Relations, Dialysis Patient Citizens Dialysis Patients Citizen’s (DPC) mission is to improve dialysis citizens’ quality of life. As a result, we have played an important role in increasing patient access to: health insurance coverage, care coordination, medications and innovative therapies. While we work hard to improve public policies for patients, sometimes we are put on defense to protect our previous hard-fought victories. One of the most important tools for protecting patient choice and access to insurance coverage is the ability of charities to provide financial assistance in helping dialysis patients purchase insurance coverage. The American Kidney Fund helps nearly one in four of our members with their [...]
Advance Care Planning
By David Mahoney, MD As a member of Dialysis Patient Citizens, you have chosen to become involved, speak up for what is important to you and take charge of the management of your health. Dialysis modality, diet, medications, exercise, management of your other health-related issues, all require your informed decision-making and action. But despite this high level of involvement in their health care, few dialysis patients have addressed the issue of advance care planning. “I don’t want to talk about that now.” “That’s for sick people, and I am doing well.” “That really scares me.” “I am NOT ready to talk about THAT!” Such reactions and comments are normal and expected. To be honest, most [...]
Insights from the Dialysis Patient Citizens 2018 Patient Survey: Patients’ Priorities for Quality Measures and New Innovations in ESRD Care
By Jackson Williams, Director of Regulatory Affairs and General Counsel, Dialysis Patient Citizens Dialysis Patient Citizens (DPC) thanks everyone who completed its 2018 Patient Survey. It is another way to make your voices heard. We use our patient survey to get your input on current issues and to convey your opinions to policymakers in Washington, DC. This year, our survey included questions on two recent developments in Washington: Medicare’s “Meaningful Measures” Initiative: In early 2018, Medicare officials announced plans to reduce the number of quality measures it uses to hold health care providers accountable. This meant that for dialysis care, the ESRD Quality Incentive Program (QIP) was due to undergo changes. We surveyed patients on [...]
New Course – Sepsis and Kidney Disease
Print out the flier The DPC Education Center has a new, easy way to help you learn! We are kicking off National Kidney Month with a brand-new course titled, "Sepsis and Kidney Disease." With this free, online mini course you will learn about sepsis, including its causes and symptoms, and how to get treatment for this potentially devastating and life-threatening condition. Explore topics by watching videos, reading articles and participating in online activities. Go at your own pace as you learn what sepsis is and what actions to take. Be an advocate for your health, and get started today!
Improvements in Dialysis Care Are Outpacing Other Serious Chronic Disease Conditions – Including Cancer and Heart Failure
Improvements in dialysis care are outpacing outcomes for other chronic disease conditions, improvements that allow patients with End Stage Renal Disease (ESRD) to live longer lives – and yielding substantial savings to Medicare – according to a new fact sheet created from the health care consulting firm Discern Health, which analyzed United States Renal Data System (USRDS) data. An analysis of the USRDS data set by Discern Health reveals that, although ESRD patients are among the most complex and costly Medicare beneficiaries to treat, improvements in dialysis care have led to improvements that translate into larger gains in patient survival than other chronic conditions such as cancer, diabetes, heart failure, stroke, and myocardial infarction. In fact, [...]
Get Your Sweat On! Exercising for Healthier Kidneys
During the webinar, the following points will be covered: Background on the benefits of regular physical activity and exercise relating to kidney function. The impact current research is showing on exercising in helping to slow down kidney disease progression. Strategies for getting started with a new exercise routine, along with tips to keep you motivated! Presented by Collette Powers, MA, RDN, LDN, ACSM EP-C, Renal Dietitian
Two Therapies Found to Help Dialysis Patients with Depression
For almost 50 years, hemodialysis has extended lives of people with chronic kidney disease. But when a patient first learns that their kidneys have failed and dialysis is necessary to survive, it can be a jolting overture of mortality. These patients usually have lived for years with diabetes or hypertension – diseases onerous for their medication regimens and lifestyle constraints. Adding dialysis, a four-hour, thrice-weekly therapy, can easily push patients into depression if they don’t already have that diagnosis. With this backdrop, researchers report today that two treatments, cognitive behavioral therapy (counseling) and the drug sertraline, effectively reduce depression among people undergoing maintenance hemodialysis. The study was published in the Annals of Internal Medicine. “Sertraline was slightly more [...]
Growing Up On Dialysis
By Julie Crandall, CBCS, CMAA, Patient Ambassador, DPC Education Center Board Member How was it to grow up with end-stage renal disease (ESRD)? Since I didn’t know any other way; for me, it was normal. I can tell you that in my case, my family was the most important people that helped me navigate childhood. It helped that they didn’t treat me like the ‘sick kid’ of the family; I was a daughter and a little sister. I didn’t know what to focus on for this article. It was difficult to narrow down my childhood with ESRD and dialysis to write this article. I hope that what I chose to focus on will help others. [...]
Work Those Kidneys Out!
By Collette Powers, MA, RDN, LDN, ACSM EP-C We have all heard it, and we all know it. We have been told from our doctor, a friend or a loved one. Whether it is for controlling high cholesterol, managing weight, reducing blood sugar or keeping our bodies healthy overall, we have all been told at some point we should exercise. But did you know exercise may help protect your kidneys too? Fatigue is a common struggle that many patients with chronic kidney disease (CKD) face. When we are tired, our instinct is to rest. However, over time, that “rest” can lead to a very sedentary lifestyle, which has many downfalls when it comes to [...]
2018 Midterm Election Wrap-Up
By Megan Hashbarger, Director of Congressional and State Relations, Dialysis Patient Citizens This past November, America held its 2018 midterm elections. We call it a midterm election because it is held between the four-year cycle of Presidential elections and is often seen as a reflection of the country’s temperament towards the President’s agenda. This cycle saw big wins for Democrats but also some solid victories for Republicans. While Democrats picked up over 40 seats and retook the majority in the House, Republicans held on to and increased their majority in the Senate. The only thing clear now is that for at least the next two years, we will have a divided government with Republicans controlling [...]
The Kidney Citizen Issue 9
Maintaining personal relationships while on dialysis, advance care planning, work those kidneys out and more!
NIH Seeks Volunteers to Help Cure Diseases and Solve Health Problems
The National Institutes of Health (NIH) is looking for volunteers to participate in the All of Us program, which is a research initiative that tracks the health of U.S. participants. The initiative is not centered around a specific disease or population. Instead, it is intended to accelerate research and improve a large assortment of health conditions by evaluating the impact of lifestyle, environment and biological makeup on health and disease. Participants may elect to help by filling out surveys, sharing electronic health records, getting a physical, sharing fitness tracker data, providing blood and urine samples, and more. The hope is that the combination of patient empowerment policies, technology and cutting-edge research will set the stage [...]
When Your Parent is Sick: Tips for Children on Managing Feelings
By Elizabeth Lewan, Communications & Grassroots Program Coordinator at the American Psychological Association Having a sick parent can be scary and stressful, especially if there are long hospital stays or physically intense treatments. Having a parent diagnosed with a serious health condition, like kidney disease, can seem especially frightening if you don’t know how it will affect your family. It is estimated that one in seven adults have chronic kidney disease.1 Your parents, doctors and family members can help you get through this tough time. Here are some tips to help you manage your feelings: Prepare for change. You may notice changes with your family and home as your parent spends more time at hospitals [...]
Become Heart Healthy This February
February is American Heart Month. Did you know heart disease is the leading cause of death for people with kidney disease? Furthermore, you are more likely to develop heart disease if you have kidney disease. You can make healthy changes to lower your risk of developing heart disease and kidney disease. Controlling and preventing risk factors is also important for people who already have these conditions. To lower your risk: Watch your weight Have your blood and urine checked Manage your blood glucose if you have diabetes Control your cholesterol Keep your blood pressure below 140/90 Be active for 30 minutes on most days and eat healthy Take medications as prescribed Quit smoking and stay [...]
It Takes a Village: Preparing Your Support Plan for Transplant Care
During this insightful webinar, help to better prepare your family for transplant care by learning: Who will need help after the transplant surgery What type of help may be needed Who can help meet those needs Presented by: Lara Tushla, Transplant Social Worker at Rush University Medical Center
DPC Education Center Launches New Website
The DPC Education Center just launched a new and fully-responsive website, making it easier than ever for dialysis patients, family members and healthcare professionals to get informed and lead healthier lives. Check out the website today at: www.dpcedcenter.org Education Through Empowerment
Scientists Hope to Eliminate the Need for Anti-rejection Drugs After an Organ Transplant with Experimental Procedure
A patient who received a liver transplant decreased his anti-rejection drugs from 40 to one (with the hope to eventually eliminate all anti-rejection medications being taken) with the help of doctors and an experimental procedure, as published this week by The New York Times. The procedure involves training the immune system of the patient receiving the organ into not attacking the new organ by manipulating white blood cells from both the organ donor and the recipient and later reincorporating those cells into the recipient. The Advantages and Disadvantages of Anti-rejection Drugs In order for organ transplants to be successful, patients must take multiple drugs to decrease the chances of the body rejecting the donated organ. [...]
