Winter 2020 Patient Newsletters

We’ve published our Patient Newsletters for Winter 2020.  They feature articles on treatment options, flu shots, grievances, access to care, how to stay informed by the Network, and how to help the Network improve patient care.  Find them at:

New Reports: USRDS, OPTN, SRTR, UNOS

The US Renal Data System (USRDS) 2019 Annual Data Report: Epidemiology of Kidney Disease in the United States has been released on paper.  The online version was released in November 2019.  Find the Report at https://www.ajkd.org/issue/S0272-6386(19)X0003-7, and the USRDS ADR page at https://www.usrds.org/adr.aspx.

The Annual Data Report of the OPTN and SRTR (the US Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients) is now available, documenting data pertaining to the period 2007-2018.  Find it at https://srtr.transplant.hrsa.gov/annual_reports/2018_ADR_Preview.aspx.  Find the OPTN home page at https://optn.transplant.hrsa.gov/ and SRTR at https://www.srtr.org/.

The United Network for Organ Sharing (UNOS) has published new vision and mission statements.  Find them at https://unos.org/news/introducing-unos-new-mission-and-vision/.

3/4 KQF Kidney Disease Impact Conference

Kidneys Quest Foundation will present a free in-person one-day 2020 Kidney Disease Impact Conference in Los Angeles on March 4, 2020.  Conference topics will include improving renal health, preventing kidney failure, expanding options for kidney patients, dialysis, home dialysis, research, clinical trials, increasing available organs for transplant, transplant support, becoming a living donor, CKD and CVD, and pediatric CKD.

Invitation is extended to renal patients, social workers, registered nurses, dietitians, dialysis technicians, medical directors, administrators and organization managers, healthcare workers, friends and family of patients, and anyone interested in kidney disease and dialysis.  Attendance and onsite parking is free, and continental breakfast and lunch will be provided.  Continuing education credits for nurses, social workers, dietitians, and dialysis technicians are available for a $50 fee.  Pre-registration is required, and space is limited.  Register at:

Find complete details, including the Conference agenda and sponsor registration information, at http://kidneysquestfoundation.org/2020-kidney-disease-impact-conference.html.

11/21 DPC Webinar on Treatment Options

Dialysis Patient Citizens will present a November 21, 2019 webinar on Treatments and Modality Options for Kidney Disease.  For details see below, and register at https://www.dpcedcenter.org/news-events/education-webinars/signup/.

10/17 DPC Webinar on Transplant

Dialysis Patient Citizens will present an October 17, 2019 webinar on Decisions You Need to Make about Your Transplant Choice.  The webinar will cover high risk donors, the transplant waitlist, and how to be a “great transplant recipient.”  RSVP at https://www.dpcedcenter.org/news-events/education-webinars/.  This is short notice, but the webinar will be recorded, and when the recording is ready you can find a link to it at the same web page, along with past webinars on topics like diabetes, employment, exercise, medications, laughter, support, and many others.  The next monthly webinar, on November 21, will be about Treatments and Modality Options for Kidney Disease.  There’s no date set yet, but the December webinar will be on Kidney Nutrition.  Find more details and RSVP for current and future webinars at https://www.dpcedcenter.org/news-events/education-webinars/signup/.

Transitional Care for Urgent Starts in Dialysis

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.

ANNA Fact Sheets on PD, AKI

The ANNA Special Practice Networks have published a series of several-page Fact Sheets on a number of topics:

Online English/Spanish Treatment Options Tool

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.

Depression Toolkit Revised

The National Forum of ESRD Networks has revised the Dialysis Patient Depression Toolkit and added a video.  Find the revised English version at http://esrdnetworks.org/resources/toolkits/patient-toolkits/new-toolkit-dialysis-patient-depression-toolkit/dialysis-patient-depression-toolkit-english and a Spanish version at http://esrdnetworks.org/resources/toolkits/patient-toolkits/new-toolkit-dialysis-patient-depression-toolkit/dialysis-patient-depression-toolkit-spanish.  A related video interview with a dialysis patient has also been recorded.  Find it at https://www.youtube.com/watch?v=N7Iv6JytQt4.

10/23+ NW16 W WA Kidney Support Group

The Road Back to Life is a nonprofit organization that provides mentoring to dialysis patients, patient support groups, and award-winning CKD classes.  They offer patient support groups in Lynnwood WA on October 23, November 27, and December 25, 2018, and in both Monroe and Mountlake Terrace WA on November 13 and December 11.  They also provide November 8, December 6, and December 13, 2018 courses on HOPE (or Healthy Options) in Mountlake Terrace, and a six-part course November 7-December 19 on Survive and Thrive with CKD in Lynnwood WA.  For details see https://www.kidneysupportgroup.com/calendar/.  For more information on The Road Back to Life see https://www.kidneysupportgroup.com/.