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?

Treating Viruses: What’s Your Past Experience?

Jul 30, 2020 06:37 am | Bailey Vincent

Replies: 0
I wrote about frustrations with virus misinformation online yesterday (Part One of this impatient patient rant), but can’t seem to handle my own confusion at how many people are confused by virus-based science.
And I’m not talking about Covid-19 specifically… but ALL viruses and bacteria, and how they impact lung health. For example, one person said we should use Z-Packs to fix coronavirus and I wanted to laugh because… well, that feels like child’s play for the typical CFer (“We eat Z-Packs for breakfast”), aside from the fact that viruses don’t respond to antibiotics in the same way as bacteria.
I am not a doctor but… well, I feel like we have learned so much more about this stuff than the everyday person! And because of that, it’s hard to see how many comments online are ill informed, or unresearched, or even “naive”, in a sense.
So this makes me curious about our communal experience:
What’s the worst virus you’ve ever battled in the past and how was it treated?

Should Doctors Judge How We Look?

Jul 29, 2020 12:40 pm | Bailey Vincent

Replies: 0
I saw a tweet this week really struck me (so much so that I wrote a column about it). It was from @crutches&spice and it said: “You cannot honestly look at the statistics of those who are denied care and respect in medical settings and think that diagnoses are easily accessed by the marginalized.”
A majority of patients with Cystic Fibrosis are diagnosed at birth, so perhaps we are not the typical example of long diagnostic journeys. However, have any of YOU felt that your race impacted your treatment in medicine over the years? Or even just “how you look”?
Personally, I definitely feel I have an advantage as a white “agreeable” woman (so say my charts) as opposed to BIPOC peers. Then again, I also have had socioeconomic hurdles throughout the years, as well as assumptions about my eating habits since I’m on thin side.
How much do you feel your appearance should play a part in the medicinal process?

How “risky” are you being?

Jul 29, 2020 07:46 am | Jenny Livingston

Replies: 3

In the beginning of this pandemic, I took quarantine very seriously and took all the recommended precautions. I stayed home, didn’t see anyone outside my household or let others inside my home, sent an extended family member grocery shopping for me, sanitized groceries and mail/packages before bringing them inside – the whole shebang! Also, since my partner is an essential worker and continued to work outside the home, we were being very careful about our interactions. We weren’t kissing or sleeping in the same bed. We even debated having him temporarily live in our camping trailer in the backyard.
As time has gone on, we are still taking things very seriously, but the activities I’m willing to participate in have changed. At some point, I started seeing some of my extended family in town. My partner and I once again share a bed. I’ve done my own grocery shopping several times now. Over the weekend, my daughter and I had a tiny overnight get-away and, today, we even went to the zoo! (Our zoo has special hours set aside for the elderly and high-risk. I was so pleased with the level of precautions that were implemented.)
My question is this: how much “risk” are you taking? What level of social distancing are you practicing? Are you still quarantined or are you going out into the world? What is your comfort level with activities outside the home?

Let’s talk about mucus (a mini Trikafta update)

Jul 29, 2020 07:25 am | Jenny Livingston

Replies: 0
Let’s talk about mucus! In what other community can you begin a discussion with those words? Hah!
I’ve posted a few updates since I started Trikafta in November, but rather than repeating all those things here, let me just say — I’ve seen some incredible improvements! The other day, I was talking with a clinical research coordinator about the potential to participate in a study that requires sputum samples. Here’s the thing: I haven’t been able to produce sputum since March. Not even a little bit here and there. Just… NONE. It’s the most bizarre thing!
Have you noticed changes in your sputum since Trikafta? Are you producing less or has the consistency changed? Have your cultures come back with different or less bacteria growth?

Body Image and Relationships

Jul 29, 2020 07:08 am | Bailey Vincent

Replies: 1
Yesterday one of those viral Instagram trends started online in which women posted black and white photos of themselves in an attempt to show #womensupportingwomen. I joined in because I was tagged (and feel sort of rude not, right?), but did so while also posting about the pressures many women feel aesthetically.
Sometimes CF or chronic illness seems to increase this pressure because many medications and surgeries impact our bodies visually and create all sorts of insecurities within insecurities.
One thing we don’t talk about a lot, however, is how self image can impact our personal relationships (dating, marriage and onward). I was talking with a CF dude-friend recently, and we both related with how hard it can be to feel unhappy with your body and it’s performance, while being expected to be happy because “at least you’re alive.”
Yes, life or death matters most… but doesn’t quality of life and self image matter a little too?
Have you ever had any physical insecurities (with your illness) impact a relationship? What are your biggest insecurities to overcome and how has your partner been involved in that process?

markers or methods to help predict exacerbations?

Jul 29, 2020 06:51 am | Melanie

Replies: 1
I just read this article about a study done in which it found markers to help indicate the likelihood of a child having an exacerbation in the near future.
This is the first I’ve heard of anyone attempting to predict an exacerbation.
Has anyone heard of other markers or methods to predict an exacerbation (beyond the obvious and free of radiation i.e. scans) such that pro-active treatment can be implemented to prevent the exacerbation etc.?
Thanks