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?

Shopping around?

Sep 08, 2020 07:35 am | Jenny Livingston

Replies: 0
I recently read (in a Facebook group I belong to) that a woman was dissatisfied with her CF center, so she was actively “shopping around.”
I’ve been with my CF team for my entire adult life, and truly, I’ve never had the desire to look elsewhere. In addition to that, my CF center is the only accredited center with a several hour drive from my home (it’s about 2.5 hours to drive one way). I suppose I’ve been lucky to be so satisfied with my care that I’ve never felt the need to shop around.
What about you? Have you received care from multiple CF teams either by choice or necessity (ie: moving out of state). If you’ve “shopped around” in the past, how did you know when you found the right team? What has your experience been with care at different centers?

How Do You Prepare For Surgeries?

Sep 08, 2020 07:12 am | Bailey Vincent

Replies: 1
How do you prepare for surgeries?
I know most of us have talked about “what we pack for hospitalizations” before, but I’m curious: Do you prepare differently for surgeries versus tune-ups?
And not just packing… But planning at home too?
I have another surgery coming up (second in 2020 which, frankly, is a really good track record!), and I’m already mentally freaking out. I won’t be able to move a lot or sit for long periods of time, so I’m already trying to prep for grocery duties (my eldest daughter wants to help cook), cleaning (man oh man do I wish we could afford cleaning help once per month, because I can assure you things will get wonky fast without my help, haha), my jobs (trying to take a week off, as can’t afford more), where I’ll sleep (our current bed won’t work well with the initial movement limitations), and more.
I won’t be allowed to bend or twist at the spine for awhile, and… Well, anyone who’s ever cleaned up after kids and animals knows that’s 90% of the job!
I hate the loss of autonomy fast approaching, but know it’s the only way to get the independence that I’ve already lost back.
While recovering, what helps YOY feel the most comfortable at home?

BreatheCon 2020: Mark your calendar!

Sep 08, 2020 07:05 am | Jenny Livingston

Replies: 1
Shared from the CF Foundation’s BreatheCon page:

BreatheCon is a free, two-day virtual event where adults with CF ages 18 and older come together to discuss their unique experiences through open and honest dialogue, while celebrating the power of community and connection.
This year’s BreatheCon is all about finding “your person” to connect with beyond CF, so we have a chance to see each other beyond just our similar diagnosis. In addition, BreatheCon will provide opportunities for everyone to find a place in the CF community, even if you’ve felt that you don’t belong.
BreatheCon will feature keynote panels, group chats, fun activities, and small-group video breakouts on issues that are unique to people living with cystic fibrosis.
Come share, connect, and learn while supporting each other and being inspired by one another.

For questions about this event, please see the Virtual Events FAQ or email virtualevents@cff.org

Does Gender Hurt Our Health?

Sep 08, 2020 01:17 am | Bailey Vincent

Replies: 2
The week is almost done, and my thoughts on loss and celebrity sickness are almost done too. I talked a bit about the loss of The Black Panther himself to colon cancer this week, and how that impacted a lot of us socially. But one thing I kept thinking to myself was: “He was diagnosed at 39”.
My partner is almost 39, and I can guarantee you he has never had a colonoscopy. Although colon cancer survival rates are tragically far worse for POC than white counterparts (as this article on Self magazine explains), another factor we don’t discuss as readily is gender.
Talking about gender disparity in the global wellness scene is not always an easy subject and can make many of us (me) feel uncomfortable. We have heard about how hard it is for women to be “heard” by physicians sometimes (averaging a couple of years delay in diagnosistic process for major ailments compared to men, as this article expands upon), but we don’t talk about how difficult it can be for men to open up about their disease process in society today.
Do you think it’s harder for men to be open about their health or potentially feeling “weak”?
Specific to CF… Have you noticed any disparities in how male and female CF patients are treated or supported?
There is no wrong or right answer to this of course, because I truly don’t know what the average reply will be, and want to learn your personal feelings on the subject. If I had to guess, I would imagine that CF women feel their symptoms are disregarded or ignored more readily than male counterparts (just based off… well, history), but that male CF patients feel they have less emotional support or that they have to “hide” what’s hurting them more often. Which, in turn, likely causes more hurt to their overall being than we’ve taken the time to track and treat.
Again, truly just hypothesizing. What do YOU think? How does gender impact care?

Hormones: Why Don’t We Talk About This?!

Sep 07, 2020 07:43 am | Bailey Vincent

Replies: 0
Last week I wrote about gender and it’s place in global healthcare (Does it hurt? Does it help us? Should it be tossed out completely?), and it reminded me of an article I read awhile back regarding how differently we treat female hormones in later years versus male.
Although I’m paraphrasing rather terribly, male hormones don’t begin to drop until later than your average female, yet the disruption for women has been traced back to earlier onsets of dementia (because our bodies thrive on stable hormone levels). The article suggested that women be their own advocates when it comes to finding replacement therapies and having their levels tested, but that was basically it. It essentially seemed to say: “There is a problem in how we do things from one gender versus another. It can have dire consequences. Make sure you look into that.”
Scary, right? I thought so, anyways. I have a friend with Cystic Fibrosis who is extremely open about his battle to treat hormone levels throughout the years (he had a lung transplant not long ago). As a CF patient, he often felt his hormones were the last topic anyone wanted to discuss, and properly treating them required “swimming upstream” for years, metaphorically, with little to no support.
Why don’t we talk about hormones more in healthcare and/or as CF patients? Why is hormonal testing and treatment not rolled into our overall care, as opposed to something we have to fight for on the side?
And, if you’re willing to share: Have your hormones ever impacted you as a CF patient?
PS. I hope to interview him one day and write a full column in this subject, but for now, just anxious to see how others feel.

Ageism In Death: Is This Unfair?

Sep 04, 2020 11:12 am | Bailey Vincent

Replies: 1
Yesterday I talked about the loss of celebrity or public role models (such as Chadwick Boseman last week) and how that can impact a community of people.
After I posted on my Instagram, I received a lot of lovely messages about loss and life and the passing of my Aunt Joyce as well, and felt this knee-jerk reaction to say: “Well she lived a long life”, as if to excuse it away. I know Chadwick was not given this chance… So, is it unfair of me to equate young loss with loss at the end of a beautiful lifetime?
I can’t help but think some of this instinct has been increased over the years by the loss of friends with CF, most of whom were very very young. I start to build a narrative of, “Well they lived a long life!” as compared to the sting of peers of were gone at 30.
The older I get, the more I realize this is not only ageist and hurtful to anyone needing to grieve, but also misses the point. Life is life, loss is loss… And who are we to draw distinctions between what hurts more or matters less?
I know this is a sensitive subject, but if you don’t mind sharing (and remembering) along with me: How old were you when you first experienced true loss (the death of someone you love)? How old was the person lost?
Moreover, if you’re willing to dive further down the rabbit hole, do you believe this sort of dismissive ageism is compounding in how we are handling late-in-life losses from COVID?