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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?

Your Disease Process: Which Organ Hurts Most

Aug 19, 2020 06:19 pm | Bailey Vincent

Replies: 7
If you had pick one organ that’s impacted the most by your disease process… Which is it?
And, in doing so, which doctors feel the most important members of your team?
Mine has undoubtedly been my stomach (as I wrote about recently on Instagram with some less-than-flattering photo memories), or- perhaps more specifically- my whole digestive system. I’ve had more intestinal surgeries than I can count, and am down a colon, large intestine, gallbladder, and beyond.
Because of this, I was extremely close with my colo-rectal surgeon and my GI team… until the former retired, and the latter moved to another specialty. I was crushed. And, though I’ve been working to find suitable replacements and carry on, it doesn’t feel “the same” just yet because I truly trusted them so much.
My new CF clinic has been amazing in terms of lung care, medicine maintenance, and amazing holistic mind-body treatment as a whole (I truly feel so lucky to be with them), but any time biliary backfires or major GI malfunctions happen… I’m still supposed to see those specialists.
I have more thoughts on this tomorrow, but for now, my question is: Which organ hits you hardest, and how many specialists do you see?

Pandemic Pause: Are You Still Able To Work?

Aug 19, 2020 05:03 am | Bailey Vincent

Replies: 0
Yesterday I posted on my Instagram stories about how both my husband and I are looking for remote or less-social jobs right now. He is a special needs teacher and behavioral counselor, but that means all potential work would place him in schools… pushing into homes… or grabbing hours at a restaurant or similar position. Because of my health and elderly parents, we are hoping to avoid exposure until there is a vaccine or a better solution by moving into a new field all together. (Admittedly, he was wanting a change long before the pandemic hit, but now feels stuck in his options.)
I am considering the same. As a writer, editor and beyond, I have the advantage with many remote positions… but my normal life’s work (dancing and teaching) is pretty high risk too, so I’ve been forced to pause. I don’t want to be a part of the problem, nor do I want to hurt my parents with possible exposure… But, we have to pay the bills also!
How are you handling risk of exposure at work during this pandemic?
I’m curious how this has hit other CFers or their family members and caregivers.
Has anyone in your family had to make adjustments or change their career position?