NW16 9/21 Patient Workshop on Home Dialysis and Transplant

Home Dialyzors United, Comagine Health ESRD Network 16, and other sponsors will present a free September 21, 2019 all-day patient educational meeting on home dialysis and transplant in Puyallup WA, called Going Home, Staying Home.  The meeting will include sessions on patient priorities, home modalities, patient safety at home, how the Network can help, a panel on transplants, and a real-time support group.  For details see these resources:

NW16 9/21 Educational Meeting on Home Dialysis

Home Dialyzors United, Comagine Health ESRD Network 16, and other sponsors will present a September 21, 2019 all-day patient educational meeting on home dialysis in Puyallup WA, called Going Home, Staying Home.  The meeting will include sessions on patient priorities, home modalities, patient safety at home, how the Network can help, a panel on transplants, and a real-time support group.  For details see the poster at https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/HDU/HDU.082119.pdf.  Find HDU’s web page on it at https://www.homedialyzorsunited.org/patient-education, and register at https://www.eventbrite.com/e/one-day-patient-education-seminar-tickets-69449765117.

9/12 UM-KECC Seeks Volunteers to Test Questionnaire

The University of Michigan Kidney Epidemiology and Cost Center, under contract to CMS, is seeking dialysis patient and facility staff volunteers to provide feedback, via a half-hour phone call, on a draft of a short self-report questionnaire on patient life goals.  They seek both patients with experience on HD, PD, or HHD, and clinical staff (nephrologists, nurses, dieticians, social workers).  Those interested are asked to send a one-paragraph statement describing your interest and experience, to dialysisdata@umich.edu by September 12, 2019.

NW16 9/21 Home Dialysis Educational Meeting

Home Dialyzors United, Comagine Health ESRD Network 16, and other sponsors will present a September 21, 2019 all-day patient educational meeting on home dialysis in Puyallup WA, called Going Home, Staying Home.  The meeting will include sessions on patient priorities, home modalities, patient safety at home, how the Network can help, a panel on transplants, and a real-time support group.  For details see the poster at https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/HDU/HDU.082119.pdf.  Find HDU’s web page on it at https://www.homedialyzorsunited.org/patient-education, and register at https://www.eventbrite.com/e/one-day-patient-education-seminar-tickets-69449765117.

Home Dialysis Success Story

Gary and Yalonda Moore are both members of the Comagine Health ESRD Alliance Network 16 Patient Advisory Council.  They were recently featured on Anchorage television station KTUU.  Gary is on home dialysis while waiting for a transplant, and frequently recommends home dialysis to other people with ESRD, especially in Alaska, where frequent travel to one of Alaska’s nine clinics can be difficult at times.  He usually stocks more than a month’s worth of dialysis supplies at home, so he’s prepared for emergencies.  Yalonda is a member of the National Forum of ESRD Networks’ Kidney Patient Advisory Council, and in her role there also frequently advocates home dialysis.  Find their TV spot and accompanying story at https://www.ktuu.com/content/news/Anchorage-family-highlights-obstacles-associated-with-kidney-disease-in-Alaska-513320711.html.

Fire Weather Preemptive Power Outages

As an example of new regulations that allow utilities to preemptively shut off power to areas with high temperatures, low humidity, and high winds, Southern California Edison has announced that it may shut off power to parts of the Coachella Valley later this week (July 2-4, 2019); see https://www.sce.com/outage-center/major-outages.  Different regulations apply to different areas, depending on perceived risk, as defined by the California Public Utilities Commission.  You can find a good summary of these issues, including a map of the areas most likely to be impacted, at https://microgridnews.com/california-utilities-plan-power-shutoffs-to-avoid-2019-wildfires/.  While these issues currently apply to California, they may soon also apply to Network 16 states.

Dialysis facilities are already required to be prepared for power outages, though many facilities share backup equipment because outages have been more local in the past.  Facilities will want to review their backup power plans to include preemptive outages and consider whether sharing backup power equipment is still practical when all nearby facilities have also gone dark.  Dialysis facilities with patients on home dialysis modalities, particularly home hemodialysis, will want to assure that all of their patients have access to adequate dialysis even if power is out for a week or more, which could occur if hot, dry, windy weather persists in an area.  Facilities will also want to assure that their home patients are well trained in how to respond to preemptive outages.  The occurrence of preemptive outages is intended to be announced by utilities in advance, but if weather changes rapidly, or individuals are difficult to locate, it may not be possible to notify everyone before the fact, so facilities may want to develop their own phone trees or other strategies, being mindful of HIPAA.

Since dialysis is not the only situation where patients and facilities are vulnerable to preemptive power outages, it may be helpful to coordinate with your county or regional Healthcare Coalition; see https://www.kcercoalition.com/en/resources/professional-resources/cms-emergency-preparedness-rule/state-healthcare-coalitions-list/california-healthcare-coalitions/ for contact information, or check with your county Health Department (Tulare, King, Kern, Orange, and Riverside Counties are absent from the KCER list).  CMS requires all facilities to report to their Network any lapse in the ability of patients to have access to dialysis because of emergency events; for details see https://nwrnbulletins.wordpress.com/2019/06/04/notify-network-of-emergencies/.

A few resources that may be useful for facilities and patients in this context: