Cystic Fibrosis News Today Weekly Forum Digest
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CF Patients Improve Lung Function with Elexacaftor Combo, Data Show
Jan 02, 2030 04:44 am | Cystic Fibrosis News Moderator
Replies: 0
Adding elexacaftor to tezacaftor and ivacaftor leads to marked improvements in lung function and quality of life in people with cystic fibrosis, data show. Read more about it here.
What do you think of this news? |
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Let’s Get Gross: Stuff We Don’t Talk About
Mar 09, 2020 09:47 am | Bailey Vincent
Replies: 1
Okay, this isn’t the most ideal topic of conversation but… Does anyone else wish they had someone to talk to about the “gross sides” of CF?
Obviously we know it comes with a lot of mucus and mayhem, but I am way too embarrassed most of the time to talk about some of the more insider things that happen.
For example, this week I sneezed, and when I sneezed, I also coughed up mucus from my lungs at the same time through the force of my sneeze (just me?) I hate the muck and mucus my feeding tubes create on the inside of my clothes, or feeling like my shirt is wet from them but I have to pretend like all is well in public.
Sometimes it’s refreshing to not hide the downsides for a change! |
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How do you know when you’re done having children?
Mar 09, 2020 09:25 am | Jenny Livingston
Replies: 0
My daughter, who is the absolute love and light of my life, is 10 years old. Having a child is something I always wanted, and I feel so blessed to have had her. But my health took quite a hit from pregnancy and, well… motherhood in general (in fact, the first few years of motherhood were far more exhausting and taxing than pregnancy itself was). I decided pretty quickly that she would be my only child, and I have been at peace with that for many years.
Well…. a couple months ago, I got a feeling I was very unfamiliar with. Completely out of the blue, I started feeling baby hungry! It was a feeling very foreign to me, and something I needed to really examine.
Ultimately, I let myself sit with that feeling for a while and landed back in the land of rational thinking. I don’t actually want another baby, and I don’t think it would be the best choice for my health. But it made me wonder how many of you (specifically women with CF) experience this back-and-forth thinking.
How do you know when you’re done having children? How do you differentiate between feeling baby hungry for a while and truly wanting to have a child? Is there a set of criteria that needs to be met (financial stability, emotional readiness, health staus, parental age, etc.) before you’d consider having a(nother) child? Are there any of you who know you don’t want more children, but still feel baby hungry sometimes?
I wrote about this in more detail on my blog if you’d like to read that here.
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What cleaning products do you use in your home?
Mar 09, 2020 07:31 am | Jenny Livingston
Replies: 2
I find that many cleaning products contain harsh chemicals that irritate my lungs and sinuses. I prefer to use natural alternatives for some cleaning (for instance, I make a solution with vinegar, a few drops of dish soap, and essential oils for kitchen counter tops and some of my floor surfaces) but I worry that natural cleaning agents don’t disinfect well enough.
Do you have any household cleaning tips? Have you been able to find cleaning products that aren’t harsh or irritating? Share your tips and tricks here! |
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What do you do for work?
Mar 06, 2020 08:45 am | Jenny Livingston
Replies: 0
Friends with CF, or parents of children with CF…
I’m curious what you do for work. Has CF influenced your career choice or ability to work (whether you’re the patient or the caregiver)? Because of CF, have you chosen a different path than you originally planned? Tell me about your work decisions or your career goals. I want to hear all about it! |
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What Do You Wish Others Knew About CF?
Mar 06, 2020 08:34 am | Bailey Vincent
Replies: 1
Today one of my colleagues asked the following question: “What do you wish people without Cystic Fibrosis knew about living with Cystic Fibrosis?”
I wish people know that not everyone has the exact same type of Cystic Fibrosis (those with variants or atypical types still exist). I wish people know it doesn’t just impact our lungs, like everyone thinks. I wish people knew CF isn’t just oxygen cannulas and coughs (I mean, it is… but it’s also Creon and bowel obstructions and sluggish colons and sinus disease and onward). It impacts us in so many ways, through so many organs, and across so many levels.
What do YOU wish others spoke more openly about? |
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traveling with a baby who has CF
Mar 06, 2020 08:25 am | Barbara
Replies: 1
Hello,
we are planning a plane trip with our baby who has CF(she will be 6 months old at the time). Do you have any advice how to protect a baby during the flight? I read a few articles regarding plane traveling but they are more for adults nothing is written about babies…
If you have experience with traveling with a baby who has a CF please share.
In the airport the plan is to keep away from the crowed but we hope that she will sleep and we will be able to keep her in buggy covered. We would have disinfection gels, disinfection tissues with us etc…
The doctor said that there is no problem for traveling, she should just wear a mask…
What is your opinion on masks? The more I read about them the more frustrated I get, there is no good option for babies, only surgical mask which are in fact not really protective for the wearer…
Do you think it would be maybe better to avoid plane trips as she is/will be still small? I am really thinking of canceling the trip as I have a feeling I will be really nervous in the airport and on the plane as I do not want that she catches something at such young age…
Thank you |
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Sterlizing nebs
Mar 06, 2020 08:05 am | Jenny Livingston
Replies: 2
I’m curious….
How do you sterilize your nebs? (Boiling, baby bottle sterilizer, dishwasher, other?)
How often do you clean them? (At the end of the day, after each treatment, or other?)
How do you sterilize them when traveling?
I’ve tried different methods, but always come back to good ol’ fashioned boiling. And I don’t travel often, but when I do, I prefer to use disposable nebs. There’s been a time or two that I’ve microwaved them (distilled water, steam bags) while traveling, but it’s definitely not my favorite. I’m curious about your neb cleaning routines! And if you have any unique tips for sterilizing while traveling, I’d love to hear them! |
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Keeping track of it all…
Mar 06, 2020 04:38 am | Jenny Livingston
Replies: 2
Pills, nebulized meds, inhalers, sinus rinses, more pills, cleaning equipment, blood sugar monitoring, refilling prescriptions, scheduling appointments, more pills, treatments, attending appointments, and oh! — did I mention pills?
The daily CF grind can be exhausting. There’s just so much to do and keep track of! I’ve been living with CF for 32 years, but there are still things I can’t remember to do consistently.
My question is this: is there anything you do to help you keep track of it all? Do you organize meds and put them in special containers? Do you have an app that helps keep things organized? Do you set reminders in your phone? I’d love to hear your tips and tricks! |
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