By Amy Walters, PhD, Licensed Psychologist If you missed this month's webinar on Psychosocial Factors Affecting Children and Families Living with Chronic Illness, the recording is now available! In addition, below is a handout to accompany the presentation about understanding and helping the caregivers in our life. What We Know About Caregivers Report feeling overwhelmed, frustrated and lonely Report high levels of stress and depressed symptoms Are tired and sleep deprived Have higher rates of illness (2x higher) but seek medical attention less often Often neglect their own self care Experience more relationship conflicts Feel a sense of loss – independence, freedom, dreams for the future Attitude matters – those who believe they are [...]
During this webinar Elizabeth Jones, MSW, LCSW will discuss 1) the benefits of working, furthering your education, training, volunteering and remaining active, 2) how these benefits can increase the likelihood of receiving a kidney transplant and decrease depression and 3) about work incentives for Social Security Disability Insurance and Medicaid recipients.
The DPC Education Center is developing a pediatric booklet for tweens and teens about having kidney disease and its treatment. If you have been living with kidney disease since childhood or are a parent of a child with kidney disease, we’d appreciate your response to this short survey by June 21st. Thanks for your input! If you were diagnosed with kidney disease as a child, click here. If you are a parent of a child with kidney disease, click here.
Researchers analyzed over four million singleton live births in Sweden during 1973-2014 and found the risk for chronic kidney disease (CKD) was doubled among births before 37 weeks of gestation and tripled among births before 28 weeks. Additionally, researchers found that the risk increased by four percent per premature week. Scientists compared the data to siblings born full-term and found the increased risk for kidney disease was not present among the siblings. The researchers concluded, "Preterm and early term birth are strong risk factors for the development of CKD from childhood into mid-adulthood. People born prematurely need long term follow-up for monitoring and preventive actions to preserve renal function across the life course." Read the [...]
Each year, more and more older adults are making a positive impact for dialysis patients across the country. As advocates, volunteers, employees, employers, educators, mentors and more, they offer insight and experience that benefit the entire community. That’s why Older Americans Month (OAM) has been recognizing the contributions of this growing population for 56 years. Led by the Administration for Community Living (ACL), each May OAM provides resources to help older Americans stay healthy and independent, and resources to help communities support and celebrate their diversity. This year’s OAM theme, Connect, Create, Contribute, encourages older adults and their communities to: Connect with friends, family, and local services and resources. Create through activities that promote learning, [...]
During this webinar, Amy Walters, PhD, Clinical Psychologist will discuss: 1) the psychological and emotional side effects of chronic illness on children and families, 2) how illness impacts different stages of childhood development, 3) common concerns reported by parents and children and 4) ways to support children and their families in coping with chronic illness. About the Presenter Amy Walters, PhD, is a clinical psychologist and the Director of Behavioral Health Services for St. Luke’s Humphreys Diabetes Center in Boise, Idaho. Dr. Walters works with patients to overcome barriers to behavioral change, learn to cope with chronic illness, and address issues of anxiety and depression which often coincide with diabetes and other chronic conditions. She [...]
Print out the flier At the Dialysis Patient Citizens Education Center we believe it is extremely important to educate kidney patients at all stages of kidney disease as well as their family members. We offer free, monthly webinars and conference calls on an assortment of topics related to kidney care. We work hard to help fill in the gaps for people living with kidney disease who need to learn more about their disease, treatments and quality of life to enable them to be key members of their health care team. Included is a list of educational topics for the year. Each month we design a flier for the current month’s program. You are [...]
If you missed last week's webinar on Relieving Pain Through Laughter, the recording is now available. In addition, here is a list of resources for people living with chronic pain: Books Explain Pain, 2nd (2014) David Butler and G. Lorimer Moseley. NOI Publications. Painful yarns, Metaphors & stories to help understand the biology of pain. (2012). G. Lorimer Moseley. The Explain Pain Handbook: Protectometer. (2014). GL Moseley & DS Butler. Your Fibromyalgia Workbook, A Neuroscience Approach to the Understanding and Treatment of Fibromyalgia. (2013). Adriaan Louw. Orthopedic Physical Therapy Products. Why Do I Hurt? A Patient Book about the Neuroscience of Pain. (2013). Adriaan Louw. Orthopedic Physical Therapy Products. Mindfulness for Beginners: Reclaiming the Present [...]
By Elizabeth Lewan, Communications & Grassroots Program Coordinator at the American Psychological Association Your kidneys have many functions in the body and play an important role in your overall health and wellness. They help the body eliminate harmful toxins by filtering waste and extra fluid from your blood, control blood pressure and keep your bones healthy. Although you have been diagnosed with chronic kidney disease, you can still live a meaningful and healthy life. You may be feeling scared or unsure about your health or the changes happening to your body. It may seem like you’re on an emotional roller coaster, or you may not know how to feel. Any of those feelings are okay [...]
April is National Donate Life Month, and it is also National Humor Month. Martinlow Spaulding, living with kidney disease for over 25 years, easily celebrates the significance of both. Spaulding is a transplant recipient who combines humor and laughter in his daily life. He tells a lot of jokes—some of them get a few giggles, and some of them get a few groans. But his positive attitude and outlook on life help him find the “funny” in a lot of situations. Spaulding, the youngest of five children, is the recipient of not one but two gifts of life—both donated by his older siblings. His first transplant was on October 6, 1993, a kidney donated by [...]
Joyology is the lifestyle that skillfully blends laughter, humor, and attitudes to help recover from difficulties and re-awaken the joy of being alive. During this webinar you will: 1) learn about joyology as a lifestyle, 2) discover ways to manage pain and 3) understand how laughter can help ease pain. Presented by: Mary Laskin, MN, RN, ACNS-BC and Steve Wilson, Psychologist, The Joyologist
By Steve Wilson, Psychologist, Joyologist, DPC Education Center Advisory Council Member Here’s a sobering prediction I came across not too long ago: 52% of American executives will die of stress-related illnesses. As a psychologist I know that the emotional tension and stress experiences by those executives will not be caused by the events in their lives. Rather, the stress will be caused by their perceptions of those events. It is not what is happening to us that hurts; it’s how we think about what is happening to us. When you received the diagnosis of chronic kidney disease (CKD), it was a lot to learn about and a lot to take in. Yet, when you attended [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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!