Cystic Fibrosis News Today Weekly Forum Digest

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Building trust in a healthcare setting

Dec 02, 2019 02:53 pm | Jenny Livingston

Replies: 0
“The CF patient population, in general, doesn’t extend their trust very easily.”
Someone said this to me during my recent hospitalization, and it’s a concept that I keep coming back to. This person is fairly new to working with the CF community and said that they keep “running into brick walls” when it comes to making headway with some of the patients.
Honestly, this isn’t the first time I’ve heard this from someone in a healthcare setting. I’ve had similar discussions with social workers, nurses, and my ENT. Trust is a concept that is vital in a healthcare setting, but it can be incredibly difficult to build and maintain.
I’ve been with my current CF team for nearly 15 years. Our relationships and bonds are well established. To say I trust them would be the understatement of the century! But it wasn’t always that way. Like any relationship, all involved parties had to learn to actively participate, communicate openly, and compromise (even when we didn’t necessarily want to).
It’s taken years to build the kind of relationship I have with my team. When meeting a new doctor, undergoing a new procedure, or welcoming someone new to the CF team, it can take a while to extend that trust…. which only makes sense! These are our bodies, our lives, our biggest priorities. We spend every single day managing this disease and taking care of our health. Letting someone be part of that or (even more difficult) letting them call the shots can be terrifying!
It’s also important to remember that trust is a two-way street. Not only is it imperative that we trust our healthcare providers, they must also be able to trust us.
What are your thoughts on patient-provider trust? Aside from time and shared experiences, what do you think it takes to build that trust?

Attending This Year’s North American CF Conference Gave Me Hope

Dec 02, 2019 05:17 am | Cystic Fibrosis News Moderator

Replies: 0

Columnist Ella Balasa learned plenty at this year’s NACFC in Nashville, Tennessee. She shares some of the incredible advances in CF research. Click here to read more from Ella.
What did you think of this column? Have you ever been to this conference?

Staying healthy during the holiday season

Dec 02, 2019 03:34 am | Jenny Livingston

Replies: 1
As we enter the holiday season, there are so many things I look forward to: good food, family gatherings, my daughter’s Christmas program and dance recital, and more. While these things can be enjoyable, they can also be scary because “holiday season” also means something else… cold and flu season! I’m always nervous attending activities where there are a lot of other people in attendance. I become hyper aware of every cough, sniffle or sneeze. It seems like my winters are entirely spent weighing the risks and benefits of going out in public. While I look forward to attending festive events, I always worry that I’ll catch a virus or something!
Can you relate to these feelings? What do you do to stay healthy during the holiday season?

Discovered Bacteria ‘Wars’ May Lead to New Antimicrobials for CF, Study Suggests

Nov 29, 2019 03:11 am | Cystic Fibrosis News Moderator

Replies: 0
An infection-causing bacteria reacts to other dangerous bacteria in ways that could be exploited to develop new CF treatments, early research suggests. Learn more here.
What do you think of this news?