MEI’s Home Dialysis Central has published a blog post on Saying No to a Kidney Transplant. The author describes the pros and cons, from their own Perspective, of a transplant versus their successful career on home dialysis. Find the post at https://homedialysis.org/news-and-research/blog/401-saying-no-to-a-kidney-transplant. MEI’s essay on Choosing Your Treatment at https://homedialysis.org/life-at-home/choosing-your-treatment, and their interactive tool My Life, My Dialysis Choice at https://mydialysischoice.org/ can help you decide in advance which treatment might be right for you from your own Perspective.
The Medical Education Institute’s Home Dialysis Central has added a video to its What Is Dialysis web page at https://homedialysis.org/home-dialysis-basics/what-is-dialysis. The video explains why removing too much fluid during dialysis, or removing it too quickly, can cause headaches, painful cramping, “washed out” feelings, and damage to the heart, brain, or kidneys, which can be cumulative and permanent, and may prevent future transplantation.
The Renal Support Network has been offering its free Annual Patient Education Meeting for kidney patients and their families in the Los Angeles area for 27 years. With COVID-19 complicating things this year, RSN did what only Lori Hartwell could have imagined doing – they went global and online, and made it five times as big! So this year, RSN Hope Week will span November 10-14, 2020 with a different theme each day: CKD on day 1, Dialysis on day 2, Transplant on day 3, All Stages of Care on day 4, and Parenting Children with CKD on day 5.
Find RSN’s press release introducing the week at https://www.rsnhope.org/press-releases/renal-support-networks-27th-annual-patient-education-meeting-goes-virtual/. Find a short version of the agenda below. It’s page 1 of their flyer, which includes a full page describing each day – find the full 6-page flyer HERE. Find brief vitae and snapshots of the full faculty at https://www.rsnhope.org/hope-week-faculty/. And register at https://www.rsnhope.org/hope-week-rsns-national-online-patient-meeting/ – there’s also a short version of the agenda on that page.
The University of Michigan KECC is conducting an ESRD Patient Reported Outcomes Quality Initiative Project Patient Life Goals Study, and seeks dialysis patients at least 18 years old to answer a new Survey that asks about your individual life goals and your dialysis facility care team. Life goals are personal goals that you think are important to achieve, such as having the ability to go to work, go to school, travel, or spend time with family. The Study aims to improve the odds that your care team will consider your individual life goals in the treatment planning process. Find an introductory letter and the Survey at https://redcapproduction.umms.med.umich.edu/surveys/index.php?s=DT4N3P48AC. There’s an easy-to-miss check box at the bottom of this page, which you have to check before the Survey questions appear. The Survey doesn’t seem to specify an expiration date.
In Blurred Lines: Keeping Safe Boundaries at a Dialysis Clinic, Lori and Network 18 Patient Services Director Eileen Rhodes discuss the problems that can arise when patients and staff become friends. Find this recorded podcast at https://www.rsnhope.org/kidneytalk/blurred-lines-keeping-safe-boundaries-at-a-dialysis-clinic/.
Previous podcasts can be found at https://www.rsnhope.org/, along with information about the Renal Support Network’s Annual Teen Prom, Annual Essay Contest, Monthly Support Group Meetings, Public Speaking Training, KidneyTalk Magazine, HOPEline Peer Support Hotline, KidneyTalk Blog, Renal Recipes, and the many other services RSN provides for ESRD patients.
NKF and Swedish Medical Center will present an April 25, 2020 four-hour workshop on Lifestyle & Kidney Health: Diet, Exercise, Weight Loss and Beyond. Topics will include nutrition, diabetes, blood pressure, fitness, and transplant preparation. Lunch will be provided. See below for full details:
Home Dialysis Central has published a blog post on Traditional Dialysis vs. Transitional Care for Urgent Starts. Transitional Care for Urgent Starts (TCU) provides a gentler and more supportive introduction to dialysis for people whose kidneys fail with little warning, helping them get past the shock of a “sudden” change of just about everything in their life, and helping them make informed decisions about treatment modality. Of course kidneys don’t fail suddenly, but sometimes it seems that way to the person whose kidneys have failed. Find the post at https://homedialysis.org/news-and-research/blog/330-traditional-dialysis-vs-transitional-care-for-urgent-starts.
The Coalition for Compassionate Care of California is conducting a survey to better understand the level of interest and engagement in a state-wide electronic Registry of Physician Orders for Life-Sustaining Treatment (POLST). POLST is a form that gives seriously-ill patients more control over their end-of-life care, including medical treatment, extraordinary measures (such as a ventilator or feeding tube) and CPR. Printed on bright pink paper, and signed by both a patient and physician, nurse practitioner or physician assistant, POLST can prevent unwanted or ineffective treatments, reduce patient and family suffering, and ensure that a patient’s wishes are honored. Since it’s designed to be readily available to all healthcare practitioners in any setting or circumstance, electronic availability would promote its purpose. For more information and a sample of the California form, see https://capolst.org/. Take the survey, if possible before August 9, 2019, at https://www.surveymonkey.com/r/3XC2PGX.
My Life, My Dialysis Choice is a free English/Spanish, values-based dialysis treatment matcher developed by the non-profit MEI and endorsed by AAKP and Home Dialyzors United. You enter your lifestyle preferences, and My Life, My Dialysis Choice suggests treatment options most appropriate for you. The tool is written at a 5th grade reading level and includes ALL types of dialysis. Find My Life, My Dialysis Choice at https://mydialysischoice.org/. It may load in either English or Spanish, but you can switch by clicking on the “English” or “Español” button in the upper left corner of the screen.
The Forum of ESRD Networks has added a recording and slides from their October 4, 2018 live webinar on Depression & Dialysis: Removing the Stigma and Strengthening our Mental Health. The event was hosted by patient leaders from the the Forum in collaboration with AAKP and NKF. Find these resources, plus ancillary tools, at http://esrdnetworks.org/education/quality-conference/quality-conference-webinar-series-2018-2019.