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Tips for caregivers

How can I help prevent my loved one from getting COVID-19?

Older people and those with underlying medical conditions, such as chronic kidney failure or people have had a kidney transplant and take immunosuppressive drugs, are at increased risk of contracting COVID-19 and developing serious complications.

Take stock of your supplies

If you are caregiver for a family member or friend who is at an increased risk of serious disease, now’s the time to make sure you are prepared by doing the following.

  • Know what medications your loved one is taking and see if you can help them have extra on hand.
  • Monitor food and other medical supplies (oxygen, incontinence, dialysis, wound care) needed and create a back-up plan.
  • Stock up on non-perishable food to have on hand in your home to minimize trips to stores.
  • If your loved one is a resident in a care facility, check whether any residents have tested positive and know what will happen should an outbreak occur.

Tips for staying well

Practice everyday preventive actions to help reduce your risk of getting sick and infecting your loved one.

  • Avoid close contact with people who are sick
  • Stay home when you are sick, except to get medical care
  • Cover your coughs and sneezes with a tissue and throw the tissue in the trash
  • Wash your hands often with soap and water for at least 20 seconds, especially after blowing your nose, coughing, or sneezing; going to the bathroom; and before eating or preparing food
  • Use an alcohol-based hand sanitizer with at least 60% alcohol, if you’re unable to wash your hands (eg, using a gas pump)
  • Clean and disinfect frequently touched surfaces and objects (eg, tables, countertops, light switches, doorknobs, and cabinet handles)

What precautions should I take when caring?

If you are caring for someone who has tested positive for COVID-19, you are at increased risk of also contracting the disease. In order to reduce your risk (and others who may be living in the home) of serious illness, you will need to carefully monitor the patient for emergency signs that symptoms are worsening, prevent the spread of germs, and carefully consider when to end home isolation.

What are the symptoms of COVID-19?

The most common symptoms of coronavirus disease (COVID-19) are:

  • Fever
  • Cough
  • Shortness of Breath

If you have symptoms call your healthcare provider immediately. You can find other information about symptoms on the Centers for Disease Control (CDC) website.

Emergency signs

If you develop emergency warning signs for COVID-19 get medical attention immediately.

Emergency warning signs*:

  • Trouble breathing
  • Persistent pain or pressure in the chest
  • New confusion or inability to arouse
  • Bluish lips or face

*This list is not all inclusive. Please consult your medical provider for any other symptoms that are severe or concerning

How to prevent the spread of germs when caring for someone who is sick

  • Have the person stay in one room, away from other people, including yourself, as much as possible
    • If possible, have them use a separate bathroom
    • Avoid sharing personal household items, like dishes, towels, and bedding
    • If facemasks are available, have them wear a facemask when they are around people, including you
    • It the sick person can’t wear a facemask, you should wear one while in the same room with them, if facemasks are available
    • If the sick person needs to be around others (within the home, in a vehicle, or doctor’s office), they should wear a facemask
  • Wash your hands often with soap and water for at least 20 seconds, especially after interacting with the sick person. If soap and water are not readily available, use a hand sanitizer that contains at least 60% alcohol. Cover all surfaces of your hands and rub them together until they feel dry
  • Avoid touching your eyes, nose, and mouth
  • Frequently disinfect all surfaces that are touched often, like counters, tabletops, and doorknobs
    • Use household cleaning sprays or wipes according to the label instructions
  • Wash laundry thoroughly
    • If laundry is soiled, wear disposable gloves and keep the soiled items away from your body while laundering. Wash your hands immediately after removing gloves.
  • Avoid having any unnecessary visitors

For any additional questions about their care, contact their healthcare provider or state or local health department

When to stop home isolation

People with COVID-19 who have self-isolated and have not been tested can stop home isolation under the following 3 conditions:

  • They have had no fever for at least 72 hours (that is 3 full days of no fever without the use medicine that reduces fevers)
  • Other symptoms have improved (eg, when their cough or shortness of breath have improved)
  • At least 7 days have passed since their symptoms first appeared

People with COVID-19 who have self-isolated and have tested can stop home isolation under the following 3 conditions:

  • They no longer have a fever (without the use medicine that reduces fevers)
  • Other symptoms have improved (for example, when their cough or shortness of breath have improved)
  • They received 2 negative tests in a row, 24 hours apart and their doctor will follow CDC guidelines

How can I keep myself and those under my care safe?

For more ways to help keep yourself and those you care for safe, see these tips.

What cleaners work against COVID-19?

The CDC recommends that frequently touched surfaces be cleaned and disinfected daily. Most common EPA-registered household disinfectants will work. Use disinfectants appropriate for the surface.

Options for cleaners include:

Diluting household bleach

  • 5 tablespoons (1/3 cup) bleach per gallon of water; or
  • 4 teaspoons bleach per quart of water

Alcohol solutions

  • Ensure solution has at least 70% alcohol

Other common EPA-registered household disinfectants

  • Products with EPA-approved emerging viral pathogens external icon claims are expected to be effective against COVID-19

Visit the CDC website for more information on cleaning and disinfecting, and other tips for prevention

How long does it take to show symptoms?

People may have the virus for 2 to 14 days before having symptoms.

Should CKD patients wear masks in public?

It is best to stay home, unless you need to attend a dialysis treatment. If you must go out in public, ask your healthcare provider if it is necessary as a CKD patient to wear a face mask since each individual case is different.

The Center for Disease Control (CDC) recommends face masks for those who are infected with COVID-19, have symptoms of COVID-19, or taking care of someone with COVID-19.

The CDC also recommends wearing cloth face coverings to slow the spread of COVID-19 in areas where community-based transmission is significant. These homemade cloth face coverings are not masks and do not replace the President’s Coronavirus Guidelines.

Tips for using a mask include a snug but comfortable fit covering the bridge of the nose and the entire mouth. Also, be sure to be laundered the cloth mask after use each outdoor use, ideally without damage to the shape or structure of the mask. The CDC is recommending a cloth face cover like the t-shirt used in this video. The CDC also recommends coffee filters as an alternative. Use of any mask is in addition to practicing social distancing or at least 6 feet from others to limit coronavirus spread. All patients at high risk, such as immunosuppressed transplant recipients or people receiving dialysis should follow the directions of their clinicians regarding the type of face covering that should be used outside of a clinic setting.

When in public it is important to practice social distancing by staying 6 feet away from other people and to also avoid touching your face. Wash your hands immediately after you have been in public.

More information about face coverings on the CDC website.

Are transplant recipients at higher risk of getting COVID-19?

Because transplant recipients take immunosuppressive drugs, they have a higher risk of infection from viruses such as cold or flu. To lower the chance of getting the coronavirus that causes COVID-19, transplant patients should follow the CDC’s guidance on how to avoid catching or spreading germs, and contact their health care professional if they develop symptoms of COVID-19.

Statement from the American Society of Transplantation (AST):
We do not have specific information on whether COVID-19 infection will be more severe in transplant recipients compared to healthy people; however, other viruses often cause more severe disease in people whose immune system is low, such as transplant recipients.

Should transplant recipients be worried about living with loved ones who go out in public or work outside the home?

A person who is living with a loved one who has contracted COVID-19 is at risk of also becoming infected. This is especially true for posttransplant patients.

Therefore, it is important for anyone to limit going into the public, especially if there is an active and expanding outbreak in their area, or if local and state authorities recommend remaining in place in an effort to maintain social distancing to help control the spread of the virus.

If people need to go into public, then they should take certain precautions, including limiting the time spent outside as much as possible, avoiding large crowds, and maintaining social distances (at least 6 feet). People with a kidney transplant should also consult with their healthcare team to find out what precautions should be taken by them and their caregivers. This might include additional hand washing/sanitizing, face coverings, or other measures.

Connecting with support resources

There are numerous online support communities and emotional support hotlines to help you if you are quarantined or remaining isolated at home. The National Alliance on Mental Health hosts online communities where people exchange support and encouragement.

NAMI also recommends the following online support resources:

  • 7 Cups: Free online text chat with a trained listener for emotional support and counseling. Also offers fee- for-service online therapy with a licensed mental health professional. Service/website also offered in Spanish.
  • Emotions Anonymous: An international fellowship of people who desire to have a better sense of emotional well-being. EA members have in person and online weekly meetings available in more than 30 countries with 600 active groups worldwide. The EA is nonprofessional and can be a complement to therapy.
  • Support Group Central: Offers virtual support groups on numerous mental health conditions - free or low-cost. Website also offered in Spanish.
  • SupportGroups.com: Website featuring 200+ online support groups.
  • 18percent: Offers a free, peer-to-peer online support community for those struggling with a wide range of mental health issues.
  • Psych Central:Offers online mental health resources, quizzes, news, an “Ask the Therapist” function, and online support communities.

NKF Peers: Connects patients who want support with someone who has been there. Speak with a trained peer mentor who can share their experiences about dialysis, transplant, or living kidney donation with you. They will also answer your questions and listen to your concerns to help you cope with issues related to COVID-19.

NKF Cares: Offers support for people affected by kidney disease, organ donation or transplantation. It's designed for patients, family members and care partners. They will also answer your questions and listen to your concerns to help you cope with issues related to COVID-19.

HealthUnlocked: Offers support to those who are self-isolating – in particular, older adults and those at high risk who require shielding from the COVID-19 virus. This community is there to protect people from the consequences of isolation.

Are young transplant recipients at increased risk from COVID-19?

" The idea that COVID-19 is sparing of young people is just false. Parents need to continue to take the virus seriously."

Lawrence C Kleinman, MD, MPH
Professor and Vice Chair for Academic Development/
Chief, Division of Population Health, Quality, and Implementation Sciences
Department of Pediatrics at Rutgers Robert Wood Johnson Medical School

Recent reports indicate that children, teens, and young adults are at greater risk for severe complications from COVID-19 and most of the children admitted to pediatric intensive care units have underlying conditions, such as kidney transplant recipients who are immunosuppressant medication.

Published findings -
A newly published study followed 48 children and young adults (newborns to 21 years old) who were admitted to pediatric intensive care units (PICUs) in the United States and Canada for COVID-19 in March and April. Over 80% of the patients had chronic underlying conditions.

During the 3-week study period, over 20% of these patients experienced failure of 2 or more organ systems due to COVID-19, and nearly 40% required a breathing tube and ventilator. At the end of the follow-up period, nearly 33% of the children were still hospitalized due to COVID-19, with 3 still needing ventilator support, 1 child on life support, and 2 children died.

New developments -
Even more recently, a growing number of children have been identified who appear to have a different response to COVID-19, which doctors are calling Pediatric Multi-System Inflammatory Syndrome. The symptoms of Pediatric Multi-System Inflammatory Syndrome include a persistent fever, rash, as well as gastrointestinal symptoms such as vomiting and diarrhea. Patients can also suffer from cardiac inflammation. In the coming days, the CDC is expected to issue guidance with information for treatment.

What parents of young transplant recipients can do?

The best way to keep children on immunosuppressant treatment well is to prevent their exposure to the virus. Continue to practice everyday preventive actions to help reduce your risk of getting sick and infecting your child and

  • Avoid close contact with people who are sick
  • Stay home when you are sick, except to get medical care
  • Cover your coughs and sneezes with a tissue and throw the tissue in the trash
  • Wash your hands often with soap and water for at least 20 seconds, especially after blowing your nose, coughing, or sneezing; going to the bathroom; and before eating or preparing food
  • Use an alcohol-based hand sanitizer with at least 60% alcohol, if you’re unable to wash your hands (eg, using a gas pump)
  • Clean and disinfect frequently touched surfaces and objects (eg, tables, countertops, light switches, doorknobs, and cabinet handles)
  • Wear a cloth mask when around your child

Contact your child’s transplant center for more information.

Reference: Shekerdemian LS, Mahmood NR, Wolfe KK, et al. Characteristics and outcomes of children with coronavirus disease 2019 (COVID-19) infection admitted to US and Canadian pediatric intensive care units. JAMA Pediatr. Published online May 11, 2020. doi:10.1001/jamapediatrics.2020.1948.

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