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Jenny Livingston started the topic Recent Favorites/Fun Activities in the forum Adults With Cystic Fibrosis 1 hour, 40 minutes ago
So far, this summer has been full of activity for my family. We’ve spent time at a semi-local amusement park, enjoyed several days at the lake, had out-of-state family come to visit, and are currently getting ready to head out on a small weekend getaway. I’m so grateful that circumstance and my health have allowed all these things to hap…[Read more]
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Jenny Livingston wrote a new item 1 hour, 40 minutes ago
So far, this summer has been full of activity for my family. We’ve spent time at a semi-local amusement park, enjoyed several days at the lake, had out-of-state family come to visit, and are currently getting r
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Jenny Livingston posted a new activity comment 1 hour, 43 minutes ago
Alex, hello and welcome to the forum! I’m Jenny, one of the forum moderators. Thanks so much for joining us here. I hope you find a sense of community, information, and support here. Please feel free to reach out if you have any questions or need help with the forum. I’m happy to help and look forward to getting to know you.
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Hiya Alex, welcome to the forum! I am Luisa and I also have CF — and am one of the forum moderators. I noticed you are newly diagnosed, which I am sure is so hard. If Jenny or I can help in anyway, we’d be more than happy to be a part of the journey! CF isn’t easy, but the CF community are an incredible group of people!
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Jenny Livingston replied to the topic A (re)introduction in the forum Adults With Cystic Fibrosis 1 day, 5 hours ago
LUISA!!! I can’t express how dang excited I am that you’re back here with us! I’m also thrilled that some of our new members will have the chance to get to know you and all your loveliness.
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Jenny Livingston posted a new activity comment 1 day, 5 hours ago
Hi, Zack, and welcome to the forum! I’m Jenny, one of the forum moderators. If you find yourself needing help with anything, please don’t hesitate to reach out. I am happy to help and so glad that you’ve joined us here. I hope that you’ll find the forum to be an interesting, fun, and supportive place.
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Jenny Livingston posted a new activity comment 1 day, 5 hours ago
Hello, Kezley! Welcome to the forum! I’m Jenny, one of the moderators here. Please feel free to reach out if you need help with anything or have any questions. I’m happy to help and so glad that you’ve joined us here. I look forward to getting to know you!
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Jenny Livingston posted a new activity comment 6 days, 18 hours ago
Kim, hello and welcome to the forum! I’m Jenny, one of the moderators here. Please don’t hesitate to reach out if there is anything I might be able to help you with. I’m so glad you’ve joined us here and am excited to get to know you!
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Jenny Livingston started the topic What do you wish doctors understood about living with CF? in the forum Adults With Cystic Fibrosis 1 week, 1 day ago
In this post, Bailey asked, “What do you wish people without CF knew about living with CF?” It can certainly be frustrating when others don’t understand certain limitations or effects of our disease, including healthcare providers at times. I want to continue the conversation Bailey started but take it a step further. What is something you wish d…[Read more]
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Jenny Livingston wrote a new item 1 week, 1 day ago
In this post, Bailey asked, “What do you wish people without CF knew about living with CF?” It can certainly be frustrating when others don’t understand certain limitations or effects of our disease, inclu
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Jenny Livingston posted a new activity comment 1 week, 1 day ago
Guiva, hello and welcome to the forum! I’m Jenny, one of the forum moderators. I am here to help if you ever need it, and I look forward to getting to know you. Thanks so much for joining us here!
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Jenny Livingston replied to the topic How is your relationship with your CF care team? in the forum Adults With Cystic Fibrosis 1 week, 3 days ago
William, I love to read responses like yours. I feel fortunate to have a similar relationship with both my doctors.
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Jenny Livingston replied to the topic Sunday Morning (66): Revisiting Carpe Diem in the forum Adults With Cystic Fibrosis 1 week, 5 days ago
The other side of the coin/birth and death interpretation is my favorite. The end is inevitable, so take this moment to breathe, to love, to enjoy, to exist. ♥
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Jenny Livingston started the topic How is your relationship with your CF care team? in the forum Adults With Cystic Fibrosis 1 week, 6 days ago
How frequently do you see your CF team (either virtually or in person) and what is your relationship with them like? Are you able to comfortably partner with them in your care decisions? Do you feel there is mutual trust there? I’d love to hear about your CF care team experiences – good, difficult, and everything in between.
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Jenny Livingston wrote a new item 1 week, 6 days ago
How frequently do you see your CF team (either virtually or in person) and what is your relationship with them like? Are you able to comfortably partner with them in your care decisions? Do you feel there is
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Jenny Livingston started the topic Trikafta and Mental Health in the forum Diagnosis Information and General Questions 2 weeks, 6 days ago
We’ve talked about the mental health side effects of Trikafta here on the forum a handful of times. I was intrigued when I saw this article pop up on my newsfeed recently (Reducing Trikafta Dose May Ease Mental Side Effects in CF Patients). It details my personal experience almost to a tee. I am so glad to know that these mental health side e…[Read more]
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Jenny Livingston wrote a new item 2 weeks, 6 days ago
We’ve talked about the mental health side effects of Trikafta here on the forum a handful of times. I was intrigued when I saw this article pop up on my newsfeed recently (Reducing Trikafta Dose May Ease Mental S
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Jenny Livingston posted a new activity comment 3 weeks, 6 days ago
Chuck, hello and welcome to the forum! I’m Jenny, one of the moderators here. Please reach out anytime if I can help you navigate the forum or answer any questions you may have. I am happy to help and so glad that you’ve joined us here!
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Jenny Livingston replied to the topic Sunday Morning (62) What Carpe Diem means in the forum Adults With Cystic Fibrosis 3 weeks, 6 days ago
I love Nicole’s writing; thanks for sharing her article here. I fully agree with you both — aging is a beautiful gift. I also like the quote you shared from Osho. It resonates deeply within me.
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Jenny Livingston started the topic Bacteriophage Therapy Success Story in the forum Adults With Cystic Fibrosis 1 month ago
This article was recently shared by CF News Today and I really wanted to talk about it here. I’ve heard of “phage therapy” off and on for the last several years, but this is the first time I’ve read of it resulting in the total eradication of antibiotic-resistant lung infection. CFTR modulators have garnered so much attention in recent years (…[Read more]
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Jenny Livingston wrote a new item 1 month ago
This article was recently shared by CF News Today and I really wanted to talk about it here. I’ve heard of “phage therapy” off and on for the last several years, but this is the first time I’ve read of it resulti
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