CF, COVID 19

With Toe's cystic fibrosis, many of the practices we are being asked to do as a nation for COVID 19 are second nature to our family (and most families with CF). Any illness has the potential to turn into a respiratory exacerbation and potentially pneumonia in my son's lungs. I have seen kids with CF go from being perfectly healthy to life threateningly sick in a matter of days or weeks. This is something CF families live with daily. COVID 19 does the same thing but for different reasons (CF - thick, sticky mucus; COVID 19- damage to the lung lining).

We have lived with uncertainty for 12 years. Plans we make for tomorrow, a week, or a month from now are understood to be tentative. CF reminds me on a regular basis to appreciate the healthy days, to take one day at a time, one decision at a time. We make a good faith effort, wash hands, do treatments, avoid germs, and work to let the rest go. This is an ongoing practice.  If there is one thing I can share with the general population during this time, it is that it's ok to live with uncertainty. Narrow your focus. Appreciate each moment.

The game has not changed for us. However, the stakes are higher. We are taking social distancing very seriously and the likelihood is that once other people return to normal lives, we will remain sequestered. We are following the CF Foundation recommendations and recommendations from our local CF clinic. I'm not really trying to plan more than a few days ahead.

For everyone, please remember the basics:
Regular and thorough hand washing and/or sanitizing - check
Avoiding germs - check
Avoiding people with coughs or other symptoms - check
Coughing into your arm - check
Keep a 6 foot distance from anyone who doesn't live with you-check
Shelter in place if you or portions of the population are sick - check

Some next-level habits we have created that might help:
*Take these with a grain of salt and if authorities recommend otherwise, follow their recommendations.

1.  Wash or hand sanitize during transitions: Getting into your car after the grocery store? Hand sanitize. Walking into the house? Wash your hands. Shifting from computer work to making dinner or a snack? Wash your hands! If you associate hand washing with a trigger (transition) it will be easier to remember to do it. (As a side note, my hands suffer from the tremendous amount of hand washing I do each day. I combat this with a really good hand lotion and sometimes gloves before bedtime. Every night.)
2. Consider changing your clothes after being in public: Even during normal times, Toe changes clothes and/or showers after school EVERY DAY. We have been changing clothes and showering after outings to the grocery store or any place where we encounter people.
3. Sanitize high traffic areas daily: I'm thinking especially of door handles, light switches, computer keyboards, phones and tablets.
4. Change hand towels daily 
5. Try a nasal rinse: We use NeilMed sinus rinse because of our allergies, but I have found that when we started using it, we became sick less often. I think flushing the nasal passages with salt water can't be a bad thing...
6. Quarantine packages and mail - J waits until the next day to empty the mail box and when a package arrives, we put it on the front porch and wash our hands. The package sits for 24 hours before we open it. I know other moms of kids with CF who are wiping down their mail and packages with bleach. We're not there yet, but I understand it. 

These measures may seem extreme, but they have worked for us. We still get sick, but  not as regularly as we did before we instigated these practices.

We are in for a roller coaster ride. All we can do is make a good faith effort and hang on. It took me years to put together these practices. I hope you see something that helps. If you're doing all of this, great job. KEEP IT UP!