Summer 2020 Network Patient Newsletters

ESRD Networks 16 and 18 have prepared their Summer 2020 patient newsletters.  Major articles and sidebars for summer include:

  • COVID-19: a New World for Dialysis Patients.
  • Telehealth: How to connect virtually with your healthcare providers. 
  • Are you up to date on all your vaccines?
  • How to Report Patient Grievances.
  • How to Get Our Newsletter! and Join Our Blog!
  • Introduction to The KidneyHub.org Mobile Tool (Network 16).
  • Invitation to Get Involved! in helping the Network improve patient care (Network 18).

Find Network 16 patient newsletters, in English and Spanish, at https://nwrn.org/patients-a-family/ptedres/quarterly-patient-newsletter.html.

Find Network 18 patient newsletters, in English and Spanish, at http://www.esrdnetwork18.org/patients/newsletters/.

New NCC Kidney Patient Web Hub

NCC has created an internet “hub” for patient education information, their ESRD NCC Patient Web Tool, to help people find resources created by patients for patients.  It’s major subsections include COVID-19. transplant, home dialysis, infection prevention, well-being, new patient information, and the Kidney Community Emergency Response Coalition or KCER.  Find it at https://thekidneyhub.org/.

4/29 COVID-19 Patient Advance Planning Webinar

The California Department of Aging will present an April 29, 2020, 1pm PDT webinar for patients and the general public on Essential Conversations: Planning for Care and Serious Illness During the COVID Crisis.  Join by phone or computer.  For details and registration see https://mailchi.mp/coalitionccc.org/no-one-should-die-alone-on-the-street-745960?e=67e1ad4c31.

4/29 AAKP HealthLine on COVID-19 and CKD 1-4

AAKP HealthLine will present an April 29, 2020 webinar on Fighting Coronavirus Upstream – What Early Stage Kidney Disease Patients Need to Know, about how people with CKD Stages 1-4 may be able to fend off COVID-19 (I’m extrapolating that from limited information).  Find more information and register at https://aakp.org/programs-and-events/aakp-healthline/.

RSN Podcasts on Hospitalization, Emotional Balance

RSN KidneyTalk has published two new podcasts on:

Network COVID-19 800 Number and Websites

During the current COVID-19 emergency, Comagine Health ESRD Network 16 and Network 18 are fully staffed, and business operations are not interrupted.  If you are a patient or facility in either Network with a concern about COVID-19, please dial our COVID-19 Helpline, 800-368-5804.

In addition to this blog, we are using four web pages as central repositories for the most critical COVID-19 information:

If you are unable to find information that you need, call the 800 number above.

4/10 AAKP/AST Webinar on Transplant & COVID-19

AAKP HealthLine, the American Society of Transplantation, and the American Society of Transplant Surgeons will host a noon PDT April 10, 2020 webinar on Coronavirus & Transplant Patients: Get the Facts, Save a Life, about the impact of COVID-19 on kidney transplant recipients and on people waiting for a transplant.  Emily Blumberg, MD, Transplant Infectious Diseases Specialist, and Lloyd Ratner, MD, MPH, FACS, Columbia University Professor of Renal and Pancreatic Transplant Surgery, will lead the webinar and will discuss questions that patients should be asking their care team.  Capacity constraints will limit attendance to the first 2,500 registrants.  Register at https://register.gotowebinar.com/register/7659454591380786188.

Notify Network of Service Disruptions

CMS requires ESRD Networks to track the status of facility operations and patient access to treatment at all facilities. If the operations of your facility, or ability for patients to have access to dialysis, are interrupted for any reason, let your Network know as soon as possible.

In Washington, Oregon, Idaho, Montana, and Alaska (Network 16), fill out and submit the Network Disaster Reporting Form at http://www.esrdnetwork18.org/machform/view.php?id=44393 (the completed form gets routed back to Network 16).  If you need assistance, you may also call or email Lisa Hall at 206-923-0714 or LHall@Comagine.org, or Brianna Smith at 509-306-8313 or BSmith2@Comagine.org.

In Southern California (Network 18), fill out and submit the Network Disaster Reporting Form at http://www.esrdnetwork18.org/machform/embed.php?id=16298.  If you need assistance, you may also call Eileen Rhodes or Anabel Galindo-Guerrero at 888-268-1539, or email them at ERhodes@Comagine.org or AGalindo-Guerrero@Comagine.org.

Never put patient name, initials, address, birthdate, SSN, other identifying information, or any other PHI or PII, in an email or online form. If PHI or PII is important in this context, call instead.