Infection control with COVID-19: What cystic fibrosis has taught me




Social media and the news circuit is filled with almost hourly updates of the spread of COVID-19 in the US.  It can be very scary for anyone, but especially for those of us who have loved ones in the most vulnerable populations.

COVID-19 scares me.  But, let's be honest, so does everything when you have CF.  The flu. Colds. Coughs. Sick people. Hospitals. Large groups of people. Flying. Pets. Dirt. Hot tubs.  I've gotten very used to being scared of things I can't see: bacteria, viruses, illnesses.  Those are kryptonite to those with cystic fibrosis.

When you live with CF, the common rhinovirus can take away your lung function and put you in the hospital, so you learn to live life with an elevated level of fear.  You also learn very quickly ways to keep yourself safe.

I thought today how strange it feels that the rest of the world is now talking about "infection control," something so commonly talked about in the CF Community.  Since people with CF can make other people with CF sick, "infection control" is super important.  At the hospital, people with CF are restricted to stay in their rooms without special permission because of "infection control."  People with CF can't even be in the same classroom at school because of "infection control."

As annoying as this is, when you have CF, I have found myself quite thankful for it today as I hear about COVID-19.  While these things are not fail-safe, they are second nature for our family.  For that reason, I thought I should share some of the things we do nearly daily to keep Bennett safe from respiratory viruses, in hopes others might feel comforted there are things they can do to keep themselves safe too.

Here are just some of the things we do in our family to keep Bennett safe from dangerous respiratory viruses:

1.) Wear a mask in the hospital (masks actually don't keep you safe but it does signal to others to keep their distance)
2.) Stay 6 feet apart from others who might get you sick
3.) Sanitize surfaces touched by a potentially sick person (Lysol wipes are our friend!)
4.) Stay out of hospitals/clinics/pharmacies at all costs
5.) Consider withdrawing from school when sickness is circling
6.) Drive, rather than fly
7.) Stay away from crowds
8.) While in the hospital, insist doctors and nurses wear gloves and a plastic gown when they care for you (we ask for them to wear masks during flu season)
9.) Don't be afraid to ask clinicians sanitize stethoscope or any other medical device before it's used on you
10.) Sanitize nebulizer cups and plastic breathing masks before treatments
11.) Increase breathing treatments and chest therapy when sick
12.) Prioritize sleep when susceptible to being sick
13.) Stay hydrated when susceptible to being sick
14.) Pay attention to good nutrition when susceptible to being sick
15.) Make sure meds are not missed
16.) Use good hand hygiene (I keep hand sanitizer on me all the time)
17.) Don't share toothbrushes, eating utensils or drinking cups; wash clothes, towels and sheets more frequently
18.) Don't shake hands, hug or kiss when sick
19.) Don't share common objects with those who are sick or might be sick (such as pens, door handles, computers)
20.) Refrain from being together in enclosed poorly ventilated places such as a car.
21.) Stay away from anyone coughing or sniffling and ask others to identify you as soon as they start feeling symptoms so you can stay away
22.) Quarantine sick family members to one room or part of the house

Here's what the CF Foundation recommends for infection control for people with CF.  It is not written with COVID-19 in mind. https://www.cff.org/Care/Clinical-Care-Guidelines/Infection-Prevention-and-Control-Clinical-Care-Guidelines/Infection-Prevention-and-Control-Clinical-Care-Guidelines/

Also, here are some tips for those trying to stay well from any respiratory virus: https://www.cff.org/Life-With-CF/Daily-Life/Germs-and-Staying-Healthy/How-Can-You-Avoid-Germs/

The CF Foundation just put out an announcement about COVID-19 today. See here.

It is my desire for the healthcare and research community to learn more about infection control.  While we know some about how viruses spread, there is a lot we don't know.  I am very hopeful that this new spotlight on how respiratory viruses spread and how to keep yourself safe will bring insights and understandings that will benefit CF community.  While I am confident COVID-19 will eventually be a thing of the past, the CF community will have to continue to think of infection control until there is a cure for CF.

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