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COVID-19 FAQs for HPEN Consumers/Caregivers

Staying Safe and Sane While Navigating COVID-19:

An FAQ for Consumers of Home IV Nutrition and/or Tube Feeding

 

Q: How do I prepare for an emergency, like being housebound during COVID-19?

A: Click here for Emergency Preparedness resources

 

Q: Do I need to order extra supplies, just in case?

A. Do not hoard medical supplies. Your insurance probably won’t cover ordering extra supplies, and so far home care companies are not reporting a shortage situation for most items. If you are concerned, reach out to your home care company branch for a status report on their supply stock.

 

Q. I’m worried I will run out of formula, TPN, hydration or my other therapies. Should I ration them?

A. Take your nutritional and hydration therapy as prescribed. Do not skip days or doses out of fear that you won’t have enough.

 

Q. Should I cancel having a home care nurse come to my house to draw labs or change a dressing?

A. If you are concerned about the nurse coming to your house, ask to speak to the nurse manager at your home care company so he/she can address your concerns. The labs are important to monitor your health, and the dressings are critical to avoiding infection.

 

Q. What can HPN consumers do to stay safe and away from the hospital?  

A. Practice good catheter care, in addition to proper handwashing and social distancing. As we have learned repeating good practice is needed and appreciated by all. If you need a refresher, reach out to your home care provider and/or team managing your HPN. You might share this article with friends and family about the importance of handwashing.

 

Q. How do I take care of a loved one with COVID-19 (suspected or confirmed) at home?

A. Read this brochure from the Accreditation Commission for Home Care.

 

Q. Where is the best place to get medical related questions answered?

A. If you have any medical related fears/questions, reach out to your home care company or doctor’s office. You can also check the websites for the Center for Disease Control (CDC) or your state health department.

 

Q. I need to check in with my health care team but I don’t want to go to clinic. Are there any options?

A. Many institutions and physician offices are ramping us the option for caring for patients using telemedicine. Call to see if this is an option for you. CMS and HHS have revised some rules, including regulations on controlled substance prescriptions (see article).

 

Q: I’m feeling very stressed lately. Does Oley have any recommendations?

A:

1. Click here to check out Oley’s Coping Resources. It includes resources that are specific for people on home IV nutrition or tube feeding, general wellness, as well as getting through the holidays.


2. Seek support from Oley staff and volunteers and members of Inspire. Reach out electronically, via the phone or a good old-fashioned letter to family and friends.


3. Take care of your physical and mental health.

            Get enough sleep. If anxiety is keeping you up, try to relax before going to bed. Shut off news, screen time at least one hour before attempting to sleep.

            Wash your hands, and avoid touching your face and your catheter/tube site unnecessarily. Clean frequently touched surfaces in your home with a household disinfectant.

            Exercise, stretch, meditate as you are able, it doesn’t need to be strenuous or for a long period of time to be beneficial in reducing your stress.


4. Check out these COVID-19 specific coping resources:

           Dealing with Stress, Anxiety, and Grief during COVID-19 – NIH Director's Blog

           Harvard Business Review's Q&A on Grief

           Disaster Distress Helpline

          CDC Coping Tips for Health Care Professionals and First Responders
           CDC Coping Tips for Employees

 

Q. I’m worried about the supply of ethanol locks. What is happening and what can I do?

A. As the supply dwindles of ethanol lock solutions that many patients are using to prevent catheter-related bloodstream infections, several of you have communicated your fears of how your “lifeline” will be affected.  Home care company representatives, clinicians, and manufacturers have all expressed concern and are working behind the scenes to explore options to provide the best care for you. The FDA has opened an avenue for approving products via Emergency Use applications. Several companies have submitted for approval and we are hoping that an appropriate option is approved. Clinicians have outlined the need for attention to this void in treatment and Oley staff has shared your fears and testimonials of years of infections halted once ethanol lock therapy was implemented. Your communication with us has allowed us to react quickly. Keeping our fingers crossed for a good outcome!

 

Q. Are there any financial assistance programs for patients during this time?

A. Check out NORD's Financial Assistance Program for Rare Disease Community Members Impacted by COVID-19,

the PAN Foundation's Directory of COVID-19 Financial Assistance programs and this more comprehensive emergency COVID-19 financial assistance listing by Grant Space.


Q. Where can my clinician learn more about nutrition support supplies and managing nutrition support for patients with COVID-19?

A. Check out the American Society for Parenteral and Enteral Nutrition's (ASPEN) COVID-19 resources page.

 

Q. What are the symptoms of COVID-19?

A. Fever, cough, and shortness of breath or difficulty breathing. In addition, the CDC has added six new symptoms to its list for the coronavirus: chills, muscle pain, headache, sore throat, repeated shaking with chills, and a loss of taste or smell.  

 

Q. Where can I learn more about COVID-19 treatment options and research?

A. Read these guidelines from the National Institutes of Health (NIH), and see these other headlines:

Q. I've had COVID-19 and recovered. Is there any way I can help?

A. Yes, the Red Cross, and FDA Seek Plasma Donations from Recovered COVID-19 Patients

The Red Cross and FDA are seeking people who are fully recovered from the new coronavirus to donate plasma to help current COVID-19 patients. Convalescent plasma is being evaluated as treatment for patients with serious or immediately life-threatening COVID-19 infections, or those judged by a health care provider to be at high risk of progression to severe or life-threatening disease

 

 

Q. Who is most at risk of hospitalization due to COVID-19?

A. During March 1–28, 2020, the overall laboratory-confirmed COVID-19–associated hospitalization rate was 4.6 per 100,000 population; rates increased with age, with the highest rates among adults aged ≥65 years. Approximately 90% of hospitalized patients identified through COVID-NET had one or more underlying conditions, the most common being obesity, hypertension, chronic lung disease, diabetes mellitus, and cardiovascular disease.

Garg S, Kim L, Whitaker M, et al. Hospitalization Rates and Characteristics of Patients Hospitalized with Laboratory-Confirmed Coronavirus Disease 2019 — COVID-NET, 14 States, March 1–30, 2020. MMWR Morb Mortal Wkly Rep. ePub: 8 April 2020. DOI: http://dx.doi.org/10.15585/mmwr.mm6915e3external icon.

 

Q. Are there any financial assistance programs for patients during this time?

A. Check out NORD's Financial Assistance Program for Rare Disease Community Members Impacted by COVID-19,

the PAN Foundation's COVID-19 Treatment and Prevention Fund and this more comprehensive emergency COVID-19 financial assistance listing by Grant Space.

 

Q. What is my risk of getting COVID-19 at an infusion center?

A. Infusion centers are experienced in caring for patients with weakened immune systems, so most likely they already have infection prevention plans in place to keep patients safe. Infection prevention plans are used all year, every year, to protect patients and healthcare workers from illnesses like the common cold and the flu. If you are concerned, call your infusion center and ask what their infection prevention plan is. It should include things like:

  • Disinfecting all patient care equipment (i.e. blood pressure cuffs, infusion chairs, IV pumps) between patient use
  • Disinfection of frequently touched surfaces such as doorknobs, phones, check-in area pens and clipboards, faucets, etc.
  • Screening patients and staff for respiratory illnesses and potential exposure
  • Limiting or restricting visitors
  • Asking patients and staff to wear a mask

Q. Are there any changes in airport security during this crisis?

A. Read about TSA's efforts to keep airline travelers safe during security checks. Of note: TSA is extending the deadline for implementing their REAL ID program to October 1, 2021.


 

updated 5/13/20

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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