SOCIAL MEDIA

18 February 2021

Emergency Preparedness and Cystic Fibrosis



Texas is in the middle of a historic winter storm event right now.  And I'm in the middle of Texas.

For many many Texans, tonight brings another day and night with no electricity and no heat.  On the heels of no heat or electricity, there is an emerging water crisis.  While the upcoming weather looks to return to our normal above freezing temperatures in the coming days, we are holding our collective breaths that our frozen pipes won't destroy our homes, businesses and schools.  This is day 7 of historic low temperatures.  We are weary.  Lest we forget we're all in the middle of a COVID pandemic that has forced us to withdraw from our normal life for nearly a year.  

The children and I are some of the luckiest ones having not lost heat and electricity during this Winter Storm.  I can only assume our power is near a critical city infrastructure and the reason why we have continued to have heat and electricity so far.  But I have gone most of the week fully expecting and prepared to lose electricity and a way to warm ourselves.  

I wanted to share some of the ways I prepared for this winter storm and some of the ideas I've learned from our CF community about how to cope in an emergency while having cystic fibrosis.  While this list won't likely help most of our CF community suffering in Texas right now, I hope it can help my future self and others who randomly find this blog at some point after googling "managing CF during crisis." 

Here are ways to prepare for an emergency when considering cystic fibrosis:

* When there is no electricity and you can't do your percussion Vest, use hand Chest Percussion Therapy (CPT).
* Consider getting an battery-powered Afflovest percussion vest.  Insurance will usually cover some portion of a new medical device every 5 years.  This is a good investment in times like these.
* Keep a list of your medications and access to your medical record/hospital portal on your phone.  
* In anticipation of an event, try to fill all prescription medications.  Even better, ask your doctor to write a 90 day prescription so you never run out of medicine.
* Store up supplies overtime.  While they take up closet space, they can also give you extra time to get supplies if something unexpected happens.
* Boil masks and nebulizers if electricity doesn't allow for baby bottle sterilization
* Remember hand hygiene is so important with CF.  Keep baby wipes on hand.
* Consider asking your doctor for a prescription for an albuterol inhaler in case you can't use your nebulizer to do albuterol.
* The eRapid can be a battery powered way to do breathing treatments.
* In an emergency, if you don't have electricity and need to do your treatments from home, try going to your local fire station.
* Remember to reach out to your CF Clinic for help or just to let them know what you're dealing with.  A CF social worker's job is to help find community resources to help during a crisis. 
* Consider purchasing a generator for backup power at home.
* Use a power inverter to do nebulized medicines in the car. 
* If on oxygen, arrange for extra oxygen tanks on hand.
* Create an emergency plan.  This link offers some really great suggestions, as well as some good scenarios to think through when you're not in the midst of an emergency.
* Connect to your community.  You don't have to fight CF alone.
* Let your utility company know you have a person with a medical condition in your home.  Some utility companies will prioritize your home's access to electricity in a crisis, if they know ahead of time.
* Have a 3-day supply consisting of one gallon of water per person per day (or more!).  Since electrolyte levels are important for people with CF, consider also having gatorade on hand as well.
* When you're in a difficult situation (emergency or not) and need help related to life with CF,  call the CFF's Compass.  They are there to help connect you to communicate organizations and resources.  
* Read about how the CF Foundation suggests families with CF prepare for emergencies.
* Feeding tube feeds can be hard without electricity.  Pumps have batteries but they need to be charged eventually.  One electricity-free feeding tube Bennett loves and uses is the bFed bolus system.

Bennett uses the bFed bolus feeding tube system.  This feeding bag works through gravity, rather than electricity.  It can easily be hands-free with the addition of the "Free Arm."  We really love not having to depend on electricity/batteries to do his feeding treatments.


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