Fall 2020 Patient Newsletters

The Network 16 and Network 18 Patient Newsletters for Fall 2020 have been posted to the Network websites, in both English and Spanish. They include articles on the Medicare Open Enrollment Period (which is open through December 7, 2020), Vocational Rehabilitation, and Dialysis Facility Compare, plus short notes on heart health and fluid management, filing a grievance, and (free) subscriptions to the Network Newsletters and blog. The Network 18 Newsletter also includes a short note on volunteering to help the Network improve patient care. Find the English and Spanish versions of the latest Newsletters at https://www.nwrn.org/patients-a-family/ptedres/quarterly-patient-newsletter.html for Network 16, and https://esrdnetwork18.org/patients/newsletters/ for Network 18.

MEI/HDC Video on Fluid Removal

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.

Hot Weather Health

In all of the resources below, remember that dialysis patients must still control their fluid intake.  For tips on Dialysis Fluids Management in English, see https://s3-us-west-2.amazonaws.com/nwrn.org/files/NW18/Fluids.Eng.pdf and in Spanish, see https://s3-us-west-2.amazonaws.com/nwrn.org/files/NW18/Liquidos.esp.pdf.  These should override the water-consumption suggestions in all of the documents below.

The Oregon Health Authority has an excellent web page on Extreme Heat, that includes FAQ sheets in English, Español (Spanish), Русский (Russian), 简体中文 (Simplified Chinese), Af Soomaali (Somali), and tiếng Việt (Vietnamese).  Find it at https://www.oregon.gov/oha/ph/Preparedness/Prepare/Pages/PrepareForExtremeHeat.aspx.

Homeland Security’s “Ready.gov” website has a thorough discussion of how to stay cool and safe in extreme heat, at https://www.ready.gov/heat.  The National Institute for Occupational Safety and Health (NIOSH) has a page on how to identify signs of heat exhaustion or heat stroke, and what to do about it, at http://www.cdc.gov/niosh/topics/heatstress/heatrelillness.html.  CDC has a program that sends out a weekly email on Five Minutes or Less for Health Weekly Tip, which also covers skin cancer, hydration, and communicable diseases from mosquitoes and ticks.  Review their hot weather Tips or sign up at https://www.cdc.gov/family/minutes/tips/summersavvy/index.htm.

Update of Kidney School Nutrition/Fluids Module

MEI has updated the most popular module, Module 9: Nutrition and Fluids for People on Dialysis, in it’s award-winning Kidney School.  The new Module 9 has been completely updated with new information about the value of eating real food, phosphorus absorption from food additives vs. meat and plants, graphics and photos, and brand-new meal plans and recipes, and was reviewed by expert renal dietitians.  A Spanish translation will be available soon.

Kidney School offers free, tailored education for people with stages 4-5 CKD.  Sixteen interactive modules at the 6th grade reading level help patients and family members learn about kidney disease, treatment options, coping skills, lab tests, diet and nutrition, and much more.  Each online module creates a Personal Action Plan.  Audio files and PDFs in English and Spanish are also available.  Continuing education credits are available for professionals.

Find Kidney School at https://www.kidneyschool.org/, and the new Module 9: Nutrition and Fluids for People on Dialysis at https://www.kidneyschool.org/m09/.

Hot Weather Health

The Oregon Health Authority has announced a #SummerBummer collection of strategies for Preventing and Responding to common hot-weather risks, including drowning, poor air quality, mosquito-borne and tick-borne illnesses, algal blooms, fecal beach bacteria, food poisoning, and extreme heat.  Find their recommendations at https://www.oregon.gov/oha/ERD/Pages/StaySafeHealthyWithSafetyTipsFromOHAAsSummerKicksOffJune21.aspx.

CDC has a comparable program that sends out a weekly email on Five Minutes or Less for Health Weekly Tip, which also covers skin cancer, hydration, and communicable diseases.  Review their Tips or sign up at https://www.cdc.gov/family/minutes/tips/summersavvy/index.htm.

Homeland Security’s “Ready.gov” website has a thorough discussion of how to stay cool and safe in extreme heat, at https://www.ready.gov/heat, and one to help you Prepare Your Home for Wildfire Season at https://www.ready.gov/wildfires.

And of course people with ESRD have special issues with food and water in the summer:

10/30 NW16 PKG Support Group

The Portland Kidney Group invites patients and care partners to their October 30, 2018 Support Group Meeting in Milwaukie OR.  Topics of discussion will include treatment options and holiday coping strategies.  Kidney-friendly refreshments will be provided, but RSVP is requested.  For details see https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/PKG/PKG1018.pdf.

9/27 PKG Support Group Meeting

The Portland Kidney Support Group invites patients and their care partners to a 10:00-11:30am meeting on September 27, 2018 in the conference room at FKC Scholls Ferry Dialysis Clinic, 10300 SW Nimbus Ave P-A, Tigard OR 97223.  Kidney friendly refreshments will be provided.  RSVP to Yasuyo at 503-443-4909, as space is limited.  Topics will include Feeling your best; making the most of your dialysis treatment by Dr. Gurvinder Suri, MD and Ideas for high protein snacks by Claudia Kreft, RD.

HDC Fluid Restriction Calculator

Home Dialysis Central has published a Dialysis Fluid Restriction Calculator to answer the question, “How much can I drink between dialysis sessions?” individualized for each patient.  For the Calculator and discussion, see https://homedialysis.org/news-and-research/blog/265-a-new-dialysis-fluid-restriction-calculator.