TOPIC:
Infection Prevention 101:
Discover healthy best practices for those with CF and their extended families!

DATE:
Thursday, February 25, 2021

GUEST SPEAKERS:
Natalie Schnell, RN
UNC Hospital Epidemiology

Enjoy the video presentation, and scroll below for answers to questions and additional resources on infection prevention.

Video Recording of Workshop Available:

What is the Efficacy of Norwex supplies & cleaning cloths with silver anti-microbial woven in?

• I was unable to find any scientific research in a peer-reviewed journal regarding this brand through UNC’s health sciences library and PubMed.  Individual ingredients of the products in question could be researched to determine whether there is proven effectiveness against bacteria, viruses, fungi, etc.  It is also important to note whether a product’s claims state that it can be used for disinfection.
• If a microfiber cleaning cloth has silver woven into the fabric, it works to inhibit microbial growth within the cloth only.  While microfiber is very effective, a cleaning solution should still be used with that item.

 
How effective are neck gaiters?

• Based on most recent research, neck gaiters are an effective means of protection, as long as they fit well and consistently stay in place.  The effectiveness can vary based on the type of material.  Very effective combination when worn over a procedure mask.

 
Are there suggestions for low odor cleaning supplies?

• One of the products used in the hospital is accelerated hydrogen peroxide (AHP), but 3% hydrogen peroxide is an effective disinfectant for home use.  This is the same concentration found at pharmacies, but I am not sure if the brand-name cleaners like Lysol or Clorox use the 3% hydrogen peroxide or AHP in their hydrogen peroxide-specific preparations.
• The EPA maintains lists of registered antimicrobial products with claims against common pathogens: https://www.epa.gov/pesticide-registration/selected-epa-registered-disinfectants
  

 
How effective is UV light for disinfection?

• For UV light to be effective, it must reach all surfaces of the area to be cleaned in question – it will not penetrate the surface.  For example, waving a device like a UV light wand over a cell phone will only disinfect that side of the cell phone – it would need to be waved over the other side, as well.  Junctions between the case and the phone can have an increased microbial burden, and physical cleaning will be the best way to ensure thorough removal.  Using items like UV light may also effect the warranty of your device – follow the manufacturer’s instructions for cleaning.
• Unlike the EPA-registered items we would use in the hospital with proven claims, there is not currently an agency that validates whether these products for home use meet the standards they advertise.  While we know UV light works effectively for disinfection, there is no way to confirm whether the devices sold by a myriad of companies use adequate amounts of light, what the specified square footage for use may be, and what the quality of the bulbs sold with the device is.

 
Do you have suggestions for proper mask fit?

• Department director Emily Sickbert-Bennett’s video for optimizing mask fit can be found here:
  https://www.youtube.com/watch?feature=youtu.be&v=UANi8Cc71A0

Recently, my friend Marla shared a "Frog and Toad Adventure" that was written about the pandemic. It made me laugh. And my daughters. Hard, at parts. Music to my ears. This pandemic hasn't taken away our joy, but some day it seems that laughter is lacking.

Frog and Toad are great — we remembered fondly, my daughters and I, when they each wrote a "Frog and Toad" adventure of their own for an assignment in middle school. Lighter days then.

In many ways, this time reminds me of the younger days of homeschooling. Our days were structured with medical, school, and household regimes. I planned out the meals and did the shopping alone to minimize germ exposure. Now, I plan out the meals, place my orders online, and utilize curbside pickup, grateful for those who shop for me. No more "last minute" trips to the store; with little impulse buying it is good for the budget.

I'm not teaching my girls, anymore — they are responsible for their own learning, for communicating with their college professors. My husband and I are both working from home, so the four of us are spread out in our different "work" zones. Our dog, Oliver, invades most of the zones, when he is not sleeping, happy to have options. Last fall, he dropped in our empty house and then followed me everywhere. Now we has four of us to follow. He is always a bright spot in our day.

Reading "Frog and Toad", hearing the girls' laughs during this serious time of uncertainty, and Oliver's frequent wags, made my day.

Here is a link for anyone interested in reading a light-hearted view of venturing out, cautiously.

Before being a mom, I worked as a school psychologist with pre-K to high school aged children.  My experience ranged from working on an itinerant basis in the inner city, to serving as a building-based school psychologist with thirty students on my counseling caseload. I learned much from each experience. The most valuable one was working with early intervention services, providing parenting workshops for parents of preschool children. I realized the parents needed skills to meet their own needs before they could meet those of their own children – like when flying, passengers are instructed to put on their own oxygen mask before that of their child. Giving parents tools to help themselves so they could help their children at a critical time in child development seemed essential. A seed was planted in the ‘save for later’ room of my mind.

My professional background helped me parent two children with special health needs as I realized the importance of focusing on the positive and choosing to live more fully in the moment. It took me a while to find my footing, though.

When I was a new mom to two children with CF, I struggled to organize and manage everything. Hospital bills and medical costs almost bankrupt us twice. We had to make wrenching decisions based on finances that moved us away from one family of origin towards the other. Our move south five years after our oldest was born reduced financial stress and allowed me to stay home with our girls. It gave me time to organize the rest of our lives.
​
With this new-found time, I wrote down schedules and organizational lists and posted them on the inside doors of kitchen cabinets. A babysitter could access that information, and my husband could see which specialty pharmacy would refill which prescription. I felt relief knowing everything was written down in case something happened to me. 

While figuring out the finances, the girls’ high nutritional needs, and treatment adherence, we realized the need to be positive. If we were stressed, the kids easily absorbed our feelings.  When home from work, my husband shared responsibilities. We became a problem-solving team, where he took over so I could step back, grieve, or vent in private. We had monthly ‘dates’ in our own home when the kids were in bed.

My mom sent me a subscription to a daily prayer periodical. I listened to podcasts about mindfulness and balance. Every morning, as my husband left for work at 5:30 AM, I rose with him and had an hour to myself before the girls awakened. This became my treasured time alone to pray, to find gratitude for my life, and to ask for strength for whatever the day brought. It became my lifeline, and I still relish this hour in my day. 

Now that the girls are older, we still try to model healthy ways to deal with daily hassles, but they realize we do not always have all the answers. When the girls were young, they needed us to be strong, confident, and consistent. If we wavered and gave an inch, they would take a mile and then it was back to square one with treatment adherence. We navigate the unknown with them and our way of responding still matters.

A few years ago, the girls and I were asked to discuss the impact CF has on our lives to a room of hospital donors. This followed a harrowing year when one daughter needed iv antibiotics for ten (10) months at home through a PICC (peripherally inserted central catheter) line. It had been a scary, uncertain time. One of the questions from the audience, was, “How did you stay positive?” I immediately answered, “Prayer and time for myself.” And it was true.  It saved me. My daughter answered, “I kept doing my school-work and taking it a day at a time. We did as much as we could to keep things normal.”

What tips could I give other parents? Carve out a time for you, even if it is not an hour like I was able to manage. Figure out what your fears are, and deal with them. What is interfering with your peace? Find solutions to break down the barriers and then take time for yourself. Develop a routine and spend time with your child(ren). Your daily actions teach your children how to behave and deal with life’s up’s and down’s. If you are positive and model resilience and hope even in the face of adversity, your children will see that. This is my ideal, and while I fall short a lot of the time, every day is a new day.

In 2016, the seed planted in my mind sprouted, and my husband and I started this non-profit, CF Parent Education Group. We offer workshops with speakers every other month for parents on topics relating to CF. We are passionate about helping parents learn about CF to increase their knowledge of this complex disease and develop relationships with other parents. We have met many, many parents who ‘get’ us, and whom we ‘get.’ We are on this journey together. Every moment is a gift.

TOPIC:
Tips to Stay Active During Quarantine!

DATE:
Thursday, May 21, 2020

GUEST SPEAKERS:
Caroline Webber
2nd year student at UNC

Brooke Guthrie
Graduate of High Point University

*Click the links below to view Resources and Tips on Staying Active:

TOPIC:
Coping with COVID-19 and an Evolving New Normal

Behavioral Health Integration Program (BHIP) & The Trauma Informed Care Program (T.I.C.) with Dr. Dana Crawford & Dr. Miguelina Germán, Montefiore Albert Einstein College of Medicine

DATE:
Thursday, March 26, 2020

The following documents may assist you and your family as you manage life during the COVID-19 pandemic. We know this is a difficult time for many families - especially those with CF. Please take a moment and review the resources below.