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?

Listening To Your Body: Has It Ever Lied?

Aug 04, 2020 07:11 am | Bailey Vincent

Replies: 0
I know we are told to “listen to your body”… but sometimes I feel like mine lies.
I have a few examples and I’d love to know yours!
One is when I spent weeks thinking my back was the source of my pain (about two years ago) and it ended up being my pancreas and liver in distress instead. It took passing out in New York City unexpectedly and my eyeballs turning yellow to realize that something was not right (and of course, was hospitalized for a stretch thereafter).
Another time is when I felt completely “fine” but my doctor told me to go to the ER because of troubling kidney levels in my labs. I kept apologizing to the nurse because “I don’t feel as sick as I normally do when I go to the hospital”, and felt I shouldn’t be there… but they ended up being right (and I was hospitalized for acute kidney failure for a stretch thereafter).
Once I knew that my stomach felt “off” and I was pooping a lot of blood, but I was genuinely surprised when an endoscope found upwards of half-a-dozen ulcers inside, considering I wasn’t in that much pain.
Sometimes it swings the other way, of course. I know something is wrong and have to wait for medicine to prove me correct. I always want to do an “I told you so dance” when my instincts are right because it feels so good to trust in myself… but, often, my instincts are completely off kilter, or pain deeply displaced.
Am I the only one who ignores “warning signs” sometimes, because they aren’t always correct?

CF and Teeth (Plus, Irrational Dental Fears)

Aug 04, 2020 06:46 am | Bailey Vincent

Replies: 1
Does anyone else have medical fears that make no sense?
Mine is teeth. I am utterly terrified of the dentist, which is nonsensical considering how many surgeries and medical procedures I’ve had in my lifetime. I had a cavity and crown scenario a week ago, and today (this morning) had 3 more fillings and a basic cleaning.
Should I be a whiny baby who wants a hug? No. Am I for no apparent reason? Yes. It’s not just my brain that overreacts… it’s my body too. Last week my face was swollen, my lymph node and ear ached, and I felt genuinely inflamed and gross for days for something that shouldn’t have caused much stress. Meanwhile, I walk out of some surgeries like a champ; kissing my biceps and flexing for fun. (Not really, but definitely in my mind.)
It’s almost funny how sweaty and nervous I can be for something like this versus far worse. (If you even say the word “gums”, I want to gag.)
Can anyone relate?

How “risky” are you being?

Aug 03, 2020 03:27 am | Jenny Livingston

Replies: 5

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)

Aug 03, 2020 02:59 am | Jenny Livingston

Replies: 4
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?

Sick Culture: Are You Feeling More Understood or Less?

Jul 31, 2020 11:24 am | Bailey Vincent

Replies: 1
In one word, how has this last month of pandemic made you feel?
I ask because- though I know it’s a sticky subject and one I’ve written about it before (including Part Two of yesterday’s vent session video)- I am finding the abundance of health discussion online rather isolating.
Essentially, the more people who say they don’t want to follow guidelines because of a medical condition, the more I doubt my own medical experiences and why we are told to follow guidelines (?) So many people are now using the words “medical condition” so loosely that term almost feels overused and misunderstood all together.
Are you feeling MORE understood right now (with more people wearing masks, isolating, and so on) or LESS? How has this impacted your social health?

The Great Mask Debate

Jul 31, 2020 04:35 am | Jenny Livingston

Replies: 0

In an effort to educate my friends and family members who suddenly believe they are the experts on masks (sigh), I’ve been sharing a variety of mask-related posts on social media. I’ve honestly been shocked by the blowback I’ve received on those posts! It seems as if, suddenly, all the reasons healthcare professionals have worn masks are invalid, the science is faulty, and my lived experiences mean nothing. It’s been incredibly disheartening.
My most recent (and likely last) post related to mask-wearing was a response to something I keep hearing, which is that “we just see things differently.”
Have you found yourself defending masks? Are the people around you wearing them? Are you, like me, frustrated by the discourse surrounding masks right now? Have you been able to turn this into a productive, helpful conversation?