A dialysis & transplant patient guide
There are many things you can do during this time of COVID-19 to take care of yourself, your living donors, friends, and your family.
This kidney and transplant patient guide has been developed by leading healthcare professionals at the University of California Los Angeles (UCLA), the Terasaki Institute of Biomedical Innovation (TIBI), and Health Literacy Media (HLM), after reviewing national guidelines, to answer commonly asked questions and explain actions you can take to help.
We particularly thank the kidney patient and donor panel who have submitted questions and reviewed content.
For kidney & transplant patients, the most important things you can do are to:
- Prevent getting and spreading COVID-19.
- Maintain your health and follow your kidney, dialysis, and transplant regimen.
- Monitor yourself for COVID-19 symptoms and get prepared if you need to act.
- Seek medical care if your health worsens.
- Stay calm and supported.
Patients and potential living donors who are waiting for transplant or donation must also understand any changes in their dialysis and transplant care and weigh the risks and benefits of pursuing or receiving a transplant, or of becoming a donor, at this time.
The following information is intended only for health education purposes and does not take the place of a doctor’s advice. You should consult with your doctor when making any decisions about your care.
This guide will be updated regularly as new information is learned. Last updated 5/19/20.
How to prevent getting and spreading COVID-19
How to maintain your health and treatment routine
How to monitor for COVID-19 symptoms
How to stay calm and supported
How your kidney care might change during COVID-19
Dialysis care changes during COVID-19
Transplant care changes during COVID-19
Deciding about transplant & living donation during COVID-19
Helpful resources for patients & caregivers
Trusted COVID-19 resources
Your own healthcare team
Talk to your own healthcare team first when making decisions about your health. Don’t forget to use telehealth when possible.
COVID-19 Transplant Listening and Resource Center
The Kidney/Transplant Patient Listening and Resource Center Center will answer your questions, help direct you to additional resources, listen to your experience, and help improve what is available for you and other patients during this time. Call toll-free: 1-800-830-0484.
Explore Transplant COVID-19 Patient Information Page
Comprehensive resource for dialysis and transplant patients to learn about what to do in the time of COVID-19. Includes a list of FAQs, patient checklist, and additional resources, updated regularly. Visit exploretransplant.org/preparing-for-covid-19-patients.
National Kidney Foundation (NKF)
List of frequently asked questions about COVID-19 that are updated regularly. Visit kidney.org/covid-19.
CDC (Centers for Disease Control)
Up-to-date information on all COVID-19 health topics in both English and Spanish. Also has a
symptom checker tool. Visit cdc.gov/coronavirus/2019-ncov/index.html.
American Society of Transplantation (AST) COVID-19 Resource Page
COVID-19 resources for transplant patients. Visit myast.org/covid-19-information.
American Society of Nephrology (ASN)
Information on protection during COVID-19. Visit asn-online.org.
United Network for Organ Sharing (UNOS)
News and resources about COVID-19. Visit unos.org/covid.
To find out if your dialysis center is open
Call your dialysis organization’s toll-free emergency number:
DaVita – 800-400-8331
Fresenius – 800-626-1297
DCI – 866-424-1900
DCI Donor Hotline/Transient Patients – 800-969-4438
DSI – 877-364-3375
ARA – 888-880-6867
RAI – 800-403-2530
US Renal Care – 866-671-8772
Satellite Healthcare – 650-830-7954
All dialysis centers including Independent Centers – dialysisunits.com
Resources for mental wellness and stress management
Guides and articles
Centers for Disease Control (CDC) information and tips to help people to be able to identify what they are experiencing and how it affects the body as well as addressing these emotions in a healthy manner. These tips also include information for communities who are at higher risk for serious illness, people coming out of quarantine, and responders.
National Alliance on Mental Illness’ (NAMI) guide with resources to address commonly experienced situations and answer frequently asked questions. Information ranges from how you can manage stress or anxiety because of COVID-19 to accessing healthcare or assistance programs that can provide financial support.
The National Network of Depression Centers complete resource page with resources for what to do if you are experiencing a personal crisis, need general mental health resources, or resources for specific conditions including depression and bipolar disorder, PTSD, or substance abuse.
Disaster Distress Helpline
Text TalkWithUs to 66746.
Crisis Text Line
Text 741741 to communicate with a trained, supervised crisis counselor.
National Suicide Prevention Lifeline
Visit suicidepreventionlifeline.org/chat to chat with a counselor.
Talkspace connects users to licensed therapists who can help with anxiety and depression management. Communication can include text, video or audio messaging, and live sessions.
Headspace offers guided meditation, breathing exercises, sleep exercises, mindfulness workouts, and many more ways to help manage stress and anxiety.
Happify offers activities and games that are evidence-based and can help you overcome negative thoughts and build resilience.
In Hand is a simple way to check in with yourself about how you are feeling and receive suggested activities or inspirational quotes that match your level of stress and mood.
Resources for financial concerns
Help paying for medicine
Financial assistance for medicines is available through pharmaceutical companies and charitable foundations including:
Roche Patient Assitance Program (Cellcept) – 800-772-5790
Novartis Patient Assitance Program (Cyclosporine) – 888-455-6655
Novartis Transplant Reimbursement Program (Neoral) – 877-952-1000
Astellas Patient Assistance Progam (Prograf) – 800-477-6472
Abbott Patient Assistance Program: (Gengraf) – 800-633-9110
Ticket to Work Program
Ticket to Work (TTW) is a voluntary work incentive program for Social Security Administration’s Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) beneficiaries ages 18-64 who want help getting employment and working to become self-sufficient. Call 866-968-7942 (TDD: 866-833-2957). Visit choosework.net.
Meals on Wheels
This organization is composed of and representing local, community-based Senior Nutrition Programs. These programs provide well over one million meals to seniors and, in some cases, those with disabilities. Programs vary with respect to eligibility, delivery method, delivery times, and special meal options. Call the toll-free number or search online to find a program near you. Call toll-free 888-998-6325. Visit mowaa.org.
Area Agency on Aging (AAA)
Provides resources for a variety of services for seniors such as senior lunch and home-delivered meals, nutrition programs, care management, and home-based care. Call 800-677-1116. Visit eldercare.acl.gov/Public/Index.aspx.
Women, Infants, and Children (WIC) Program
This program serves pregnant, breastfeeding, and postpartum women, infants, and children up to 5 years old in low-income families. Call toll-free 888-942-2229. Visit fns.usda.gov/wic/wic-fact-sheet.
Homeownership Preservation Foundation
This program is for any homeowner in America having trouble paying their mortgage. Available 24 hours a day, 7 days a week. Absolutely free foreclosure prevention counseling by expert counselors at Housing and Urban Development-approved agencies. Usually, services can begin right away – the counselors themselves answer the phone. Homeowners can get budget help, a written financial plan, and assistance contacting their lender. If they’d like face-to-face counseling or need local resources, homeowners are referred to their local NeighborWorks® organization. Call 888-995-HOPE (4673). Visit 995hope.org.
United Way-Funded Helpline, 2-1-1
2-1-1 is an easy to remember, three-digit dialing code that connects people in need with essential health and human services 24 hours a day, 7 days a week. Calls to the helpline are answered by Community Resource Advisors who search a database of listings and provide practical information about how to get food, money and other help from government programs and community agencies in the caller’s area. Call 2-1-1. Visit 211la.org.
Lifeline is a government assistance program that helps income-eligible customers save money on their phone bills and stay connected to vital emergency and community services, friends, and family. Under the Lifeline program, wireline customers receive a discount, which varies depending on their local telephone service provider. Visit lifeline.gov.
Los Angeles Local Transit Services Directory (RIDEINFO)
A facilitated referral service for people in Los Angeles that matches a person’s transportation needs with available accessible transportation like Dial-A-Ride, Lift Van/Shuttle, and Taxi services. The agencies referenced include those which provide transportation to persons in certain communities, medical patients, or agency clients only; some fares are minimal, others may be costly. Call 800-431-7882 (TDD: 800-431-9731). Visit accessla.org.
Veterans Care Coordination
Coordinates affordable home care for veterans and their surviving spouses. Call toll-free 855-380-4400.
Resources for children, teens, and families
Use these if you are sheltering in place with children and teens.
National Public Radio (NPR) comic for parents to talk to their kids about the coronavirus
Psychology Today’s comic on how to talk to kids and teens about the coronavirus, includes comics, podcasts and other helpful links
The Government of India partnered with physicians to create a comic for COVID-19 awareness
KidsHealth provides information on helping kids understand how to talk to your child, what to do if your child is sick, how to prepare your family, preventing the spread, and social distancing with children
Covibook, a short book about COVID-19 to support and reassure children under the age of 7; available in multiple languages
World Health Organization's (WHO) one-pager on helping children cope with stress during COVID-19 outbreak
The National Child Traumatic Stress Network’s handouts for parents/caregivers helping their families cope with coronavirus; available in multiple languages
Upcoming patient events
Information from experts
What is Coronavirus (COVID-19)?
- NBC News’ chart and video that shows how critical it is for everyone to fight coronavirus spread
- The Spinoff’s the three phases of COVID-19 and how we can make it manageable
- The Vox’s guide and several article to essential information on COVID-19
- Education from X-Plain Patient Education that covers symptoms, diagnosis, treatment and prevention; available in multiple languages
- Healthwise’s infographics and frequently asked questions about coronavirus
COVID-19 Myths and Spotting Misinformation
- World Health Organization’s (WHO) advice for the public regarding COVID-19 myth
- Time Magazine’s article on how to spot misinformation
- Medium's article that helps separate the facts from the misinformation about COVID-19
- CNN Audio’s series of Coronavirus related podcasts from CNN Chief Medical Correspondent Dr. Sanjay Gupta
Practices to help keep you and others healthy
- Social distancing
- Wash your hands frequently
- Avoid touching eyes, nose, and mouth
- British Broadcasting Corporation’s article on how to avoid touching your face
What to do if you think you are sick
- Medium’s article on how to tell if you have the flu, coronavirus, or something else
- ER doctor explains what to do if you start showing coronavirus symptoms on an MSNBC video
- Vox’s article on how to self-isolate if you think you have coronavirus, advice from medical professionals, officials and experts
- Coronavirus Checker Beta is an online tool that asks you about your symptoms and suggests next medical steps. It is based on best clinical practices, Centers for Disease Control (CDC) guidelines, illness severity and risk factors like age and pre-existing conditions.
Transplant and dialysis-specific resources
- National Kidney Foundation’s (NKF) guide to help kidney patients be prepared for COVID-19. Available in English and Spanish.
- American Society of Transplantation’s (AST) frequently asked questions from transplant candidates and recipients
- AST’s fact sheet with frequently asked questions for organ transplantation
- United Network for Organ Sharing’s (UNOS) latest updates for transplant programs, Organ Procurement Organizations (OPOs) and Organ Procurement and Transplant Network (OPTN)
- Centers for Disease Control and Prevention’s (CDC) guideline for kidney patients with suspected or confirmed COVID-19 in outpatient dialysis facilities
- Dialysis Patient Citizens Education Center’s coronavirus disease information page for dialysis patients and YouTube webinar with helpful tips on what kidney patients and their families can do to protect themselves
- Medicare’s latest updates on COVID-19, coverage information, and telehealth services
- National Kidney Registry’s (NKR) latest updates for COVID-19 test kits for living donors, recipients of living donor organs and potential recipients of deceased donor organs
- Kidney Transplant Centers’ list of currently active and non-active living donor transplants programs/centers
- CDC's official COVID-19 website with information about how to protect yourself and your family, high risk groups, information for caregivers and healthcare providers, as well as a situation summary
- CDC’s print resources for information on COVID-19, including preparation, prevention, and treatment. Formatted for hand outs and posters
- CDC’s video resources for the latest information about COVID-19
- World Health Organization's (WHO) advice for the public, including prevention, travel advice and information on the COVID-19 response fund
- Occupational Safety and Health Administration’s (OSHA) guide on exposure risk for U.S. workers, including identifying potential sources of exposure
- Kaiser Family Foundation’s (KFF) COVID-19 Interactive Coronavirus Tracker, updated regularly
- KFF’s tending COVID-19 topics page, including updates on global health policy, state level policy, updates from KFF's executives
- California Department of Public Health provides information on state ordinances, state COVID-19 case and death numbers, amongst other state response updates
- Los Angeles County Department of Public Health’s daily updates on Los Angeles County cases and deaths, includes Los Angeles County’s COVID-19 background information and resources
UCLA health resources
- UCLA Health’s Coronavirus website, with virtual help assistant to assist with appointments, locating doctors, and other COVID-19 resources as it relates to UCLA Health patients, staff and providers
- Johnese Spisso’s, president of UCLA Health and CEO of the UCLA Hospital System, guest interview on CNBC’s ‘Squawk on the Street’ with Carol Quintanilla and Michael Santoli
- UCLA Bruins Safe Online’s COVID-19 updates for university students, staff and faculty
- UCLA Campus Human Resources’ Staff and Faculty Counseling resources, including services for crisis management and work life issues
- David Geffen School of Medicine’s Behavioral Wellness Center offers mental health services, including crisis management and telehealth appointments
- UCLA’s Arthur Ashe Student Health & Wellness Center’s page for health advisory and travel updates, Infection Control Line (310-206-6217), and prevention information
Resources for children, teens, and families
- National Public Radio’s (NPR) comic for parents to talk to their kids about the coronavirus
- Psychology Today’s guide on how to talk to kids and teens about the coronavirus, includes comics, podcasts and other helpful links
- Government of India partnered with physicians to create a comic for COVID-19 awareness
- KidsHealth provides information on helping kids understand how to talk to your child, what to do if your child is sick, how to prepare your family, preventing the spread, and social distancing with children
- Covibook, a short book about COVID-19 to support and reassure children under the age of 7; available in multiple languages
- WHO’s one-pager on helping children cope with stress during COVID-19 outbreak
- The National Child Traumatic Stress Network’s handouts for parents/caregivers helping their families cope with coronavirus; available in multiple languages
Resources for mental health and relaxation
- UCLA Health offers free guided meditation that you can listen to anytime
- CDC’s guidelines for managing stress and anxiety during COVID-19
- National Alliance on Mental Illness’ information and resource guide related to COVID-19
- Los Angeles County Department of Mental Health’s (LACDMH) flyer on how to cope with stress during infectious disease outbreaks; available in 13 languages
- LACDMH’s brochure on wellbeing apps
- CDC’s guidelines on reducing stigma for persons of Asian descent, people who have traveled, and emergency responders or healthcare professionals
- CDC’s guidelines on taking care of your emotional health during an emergency