Cystic Fibrosis News Today Forums | Site-Wide Activity https://cysticfibrosisnewstoday.com/forums/activity/ Activity feed for the entire site. Sat, 25 Jul 2026 02:03:26 -0500 https://buddypress.org/?v=3.1.1 en-US 30 hourly 2 ca06e5c7d017b4a96475ad01d18a9b24 Community Member posted an update in the group Ask Me Anything: What has helped you feel supported while still […] https://cysticfibrosisnewstoday.com/forums/activity/p/8759/ Fri, 24 Jul 2026 08:13:32 -0500 What has helped you feel supported while still maintaining your own independence?

]]> 1 48929902e6b2c20806d99e9f8b592e83 Community Member posted an update in the group Ask Me Anything: If so, what helps you manage it? https://cysticfibrosisnewstoday.com/forums/activity/p/8757/ Fri, 24 Jul 2026 07:58:33 -0500 If so, what helps you manage it?

]]> 1 6ab6f4b99a70c97b9c5a14eb05855c6e Community Member posted an update in the group Ask Me Anything: What did support around movement and activity look […] https://cysticfibrosisnewstoday.com/forums/activity/p/8755/ Thu, 23 Jul 2026 17:15:55 -0500 What did support around movement and activity look like growing up with CF?

]]> 1 4510754f5b87d4c2e851c8b587a94a41 Community Member posted an update in the group Ask Me Anything: How do you explain your health with a partner? https://cysticfibrosisnewstoday.com/forums/activity/p/8753/ Thu, 23 Jul 2026 17:06:02 -0500 How do you explain your health with a partner?

]]> 1 4c24caf45d4045f0e08390620d64d4ad Community Member posted an update in the group Ask Me Anything: Is there something you wish they knew without you having […] https://cysticfibrosisnewstoday.com/forums/activity/p/8751/ Thu, 23 Jul 2026 16:35:17 -0500 Is there something you wish they knew without you having to explain it?

]]> 1 524b8697ecf3890cb1ec2fea57aa70be Community Member posted an update in the group Ask Me Anything: Has anyone in the group ever tried to manage CF outside […] https://cysticfibrosisnewstoday.com/forums/activity/p/8749/ Thu, 23 Jul 2026 09:19:13 -0500 Has anyone in the group ever tried to manage CF outside of an official CF Clinic/Center? Centers are few and far between in the Southern US. Have you ever just gone to a general pulmonologist? If so, how’d that work out? I am currently traveling about 6-7 hours to get my center of choice. I so envy those who have a choice of several centers nearby!

]]> 1 3515f9b1f1887d9d5b8b2d426f38d8a0 Community Member posted an update in the group Ask Me Anything: How do you hold on to your identity, interests, and joy […] https://cysticfibrosisnewstoday.com/forums/activity/p/8746/ Wed, 22 Jul 2026 10:38:42 -0500 How do you hold on to your identity, interests, and joy when CF takes up so much space?

]]> 1 0b31db6d8b685e14427e548782c3acd6 Community Member posted an update in the group Ask Me Anything: How has connecting with others who understand CF shaped […] https://cysticfibrosisnewstoday.com/forums/activity/p/8743/ Wed, 22 Jul 2026 10:31:18 -0500 How has connecting with others who understand CF shaped your hope, perspective, or decisions about your health?

]]> 1 e7b6f85c9903300be66f2dc1281dd4c6 Community Member posted an update in the group Ask Me Anything: What people, places, or moments help you reset when CF […] https://cysticfibrosisnewstoday.com/forums/activity/p/8741/ Wed, 22 Jul 2026 10:26:28 -0500 What people, places, or moments help you reset when CF feels especially heavy?

]]> 1 ced22096edef94fb27ef01eb0d6cf846 Community Member posted an update in the group Ask Me Anything: How can they raise concerns, ask questions, or seek a […] https://cysticfibrosisnewstoday.com/forums/activity/p/8739/ Wed, 22 Jul 2026 10:14:34 -0500 How can they raise concerns, ask questions, or seek a second opinion while still feeling respected?

]]> 1 433d12a6b74c06be9b96373446bc63a9 Community Member posted an update in the group Ask Me Anything: Do you bring notes, ask for clarification, bring a […] https://cysticfibrosisnewstoday.com/forums/activity/p/8736/ Tue, 21 Jul 2026 20:19:47 -0500 Do you bring notes, ask for clarification, bring a support person, or use another strategy that helps?

]]> 1 3049bf87db5b9040af2b015946d839ce Community Member posted an update in the group Ask Me Anything: What actions or words have made you feel genuinely seen? 🥰 https://cysticfibrosisnewstoday.com/forums/activity/p/8734/ Tue, 21 Jul 2026 20:09:34 -0500 What actions or words have made you feel genuinely seen? 🥰

]]> 1 062a2f8f9045a12c1c3a4be1ec5b84aa Community Member posted an update in the group Ask Me Anything: How have rapidly evolving treatments, changing […] https://cysticfibrosisnewstoday.com/forums/activity/p/8728/ Mon, 20 Jul 2026 20:49:21 -0500 How have rapidly evolving treatments, changing public understanding of CF, and the relationships in your life shaped the way you imagine what is ahead?

]]> 1 e1fe0b662731da181ef46cac31186f5e Community Member posted an update in the group Ask Me Anything: How does it help you manage burnout, depression, anxiety, […] https://cysticfibrosisnewstoday.com/forums/activity/p/8726/ Mon, 20 Jul 2026 20:47:29 -0500 How does it help you manage burnout, depression, anxiety, or the emotional weight of living with CF?

]]> 1 0e897b64a2ae783899acfd3f87b2a0c5 Community Member posted an update in the group Ask Me Anything: Was it a person, a new perspective, a routine, or […] https://cysticfibrosisnewstoday.com/forums/activity/p/8724/ Mon, 20 Jul 2026 20:46:05 -0500 Was it a person, a new perspective, a routine, or something you discovered about yourself?

]]> 1 cdc002a6974222149d19af826526f935 Community Member posted an update in the group Ask Me Anything: It could be a big milestone or a moment of joy when you […] https://cysticfibrosisnewstoday.com/forums/activity/p/8721/ Mon, 20 Jul 2026 20:36:58 -0500 It could be a big milestone or a moment of joy when you kept going despite how hard things felt.

]]> 1 6da97e261f2f91078ca849286324ae87 Community Member posted an update in the group Ask Me Anything: Was there a particularly difficult time with your […] https://cysticfibrosisnewstoday.com/forums/activity/p/8720/ Mon, 20 Jul 2026 20:32:28 -0500 Was there a particularly difficult time with your health that ultimately shifted your perspective, helped you grow, or made you feel more like yourself?

]]> 1 2320e061aa36aa15f6e4adaa4df8dbea Community Member started the discussion Do you hide or talk about CF on a first date? in the forum Dating, Relationships, and Marriage https://cysticfibrosisnewstoday.com/forums/forums/topic/do-you-hide-or-talk-about-cf-on-a-first-date/ Mon, 20 Jul 2026 13:43:45 -0500 Do you hide or talk about CF on a first date?

CF is an invisible condition, meaning your outward experience does not match how you feel inside. Sometimes it feels like I’m cosplaying a healthy person when I look in the mirror. Dating can be tricky, so if I can get confused, my possible suitor can too. 

 

When I go on a date, depending on how I feel about them and how much I trust them, I…

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]]> 2a9c809d628f691f6fc3e16b606a22d5 Community Member wrote a new item Mon, 20 Jul 2026 13:43:45 -0500 CF is an invisible condition, meaning your outward experience does not match how you feel inside. Sometimes it feels like I’m cosplaying a healthy person when I look in the mirror. Dating can be tricky, so if […]

]]> 0 d6a205dab8a95b70fb7fd2dddc83057d Community Member started the discussion How did CF change your high school and/or college experience? in the forum Going​ ​To​ ​College​ ​With CF https://cysticfibrosisnewstoday.com/forums/forums/topic/how-did-cf-change-your-high-school-and-or-college-experience/ Mon, 13 Jul 2026 14:59:30 -0500 How did CF change your high school and/or college experience?

CF, despite modulators and other airway clearance methods, still causes infections that can significantly affect our lives, especially when we are in high school and/or college. With frequent hospitalizations, doctor appointments, and feeling bad in general, this leads to a unique and different high school and/or college experience, compared…

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]]> 18733848d202dd6530875f41c14e5ea5 Community Member wrote a new item Mon, 13 Jul 2026 14:59:30 -0500 CF, despite modulators and other airway clearance methods, still causes infections that can significantly affect our lives, especially when we are in high school and/or college. With frequent […]

]]> 0 69b604d6f01522872166705b695c24c3 Community Member posted an update: Thank you for this forum. I'm curious about people who […] https://cysticfibrosisnewstoday.com/forums/activity/p/8705/ Tue, 07 Jul 2026 20:27:16 -0500 Thank you for this forum. I’m curious about people who may have side effects from the medication. In particular any psychological side effects. And any added complications after taking the COVID vaccinations or shots, whichever word you prefer.

]]> 1 273e9283433d4d4b590ed91d2631ef6b Community Member posted an update: Jen, as a parent of Chad, a CF Adult, I would just like […] https://cysticfibrosisnewstoday.com/forums/activity/p/8704/ Tue, 07 Jul 2026 19:17:51 -0500 Jen, as a parent of Chad, a CF Adult, I would just like to thank you for agreeing to be a moderator for this conversations group and helping to facilitate this effort and give your thoughts.

May you be healthy

]]> 1 bf2711c3b53eb7fd3744f4611529b11f Community Member started the discussion What are your CF traveling tips? in the forum Adults​ ​With​ ​CF https://cysticfibrosisnewstoday.com/forums/forums/topic/what-are-your-cf-traveling-tips/ Mon, 06 Jul 2026 14:00:00 -0500 What are your CF traveling tips?

Traveling in general is a headache; traveling with cystic fibrosis can cause a migraine. While others can pack just the essentials, those with CF need their meds, backup meds, a vest, a vest machine, and to know where a CF-proficient hospital is in the area they are going to. It’s very daunting, but it can and is done!

 

As a kid, my mom took…

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]]> 74132983b6fe871250cf6182ffbe5b39 Community Member wrote a new item Mon, 06 Jul 2026 14:00:00 -0500 Traveling in general is a headache; traveling with cystic fibrosis can cause a migraine. While others can pack just the essentials, those with CF need their meds, backup meds, a vest, a vest machine, and to […]

]]> 0 0b3314eee69795fb54c80ad0708cf425 Community Member started the discussion What CF advice do you wish was given to your younger self? in the forum Support Groups https://cysticfibrosisnewstoday.com/forums/forums/topic/what-cf-advice-do-you-wish-was-given-to-your-younger-self/ Mon, 29 Jun 2026 14:00:24 -0500 What CF advice do you wish was given to your younger self?

No matter when you received your CF diagnosis, it is a traumatic and life-changing conversation. Hindsight is 20/20, and although we can’t change the past, we can help others change their present. At two years old, I was diagnosed with CF. So I never really knew a life without CF. I have been given a lot of advice in my life from doctors, my…

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]]> 73fdd9b54d364d3bb12ca26058a3aced Community Member wrote a new item Mon, 29 Jun 2026 14:00:24 -0500 No matter when you received your CF diagnosis, it is a traumatic and life-changing conversation. Hindsight is 20/20, and although we can’t change the past, we can help others change their present. At two years […]

]]> 0 c34f5a2ecbc4448cbea9ed2fda57a6ca Community Member started the discussion Do you have a special relationship with your CF providers? in the forum Treating CF https://cysticfibrosisnewstoday.com/forums/forums/topic/do-you-have-a-special-relationship-with-your-cf-providers/ Mon, 22 Jun 2026 14:00:56 -0500 Do you have a special relationship with your CF providers?

Living with CF, we spend a lot of time in the hospital, at the clinic, and with our providers. Often, we form special relationships with them. When we have these healthy, enriched relationships with our providers, we feel safer, less anxious about visits, and more connected to the people who, let’s be real, have our lives in their hands. I have…

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]]> f6be6c040d00763c0561244a7275cc88 Community Member wrote a new item Mon, 22 Jun 2026 14:00:56 -0500 Living with CF, we spend a lot of time in the hospital, at the clinic, and with our providers. Often, we form special relationships with them. When we have these healthy, enriched relationships with our […]

]]> 0 4cc79f80c646d769192f3e9afa604985 Community Member replied to the discussion What is your motivational CF theme song? in the forum Mental Health https://cysticfibrosisnewstoday.com/forums/forums/topic/what-is-your-motivational-cf-theme-song/#post-20190 Thu, 18 Jun 2026 17:08:51 -0500 Reply to What is your motivational CF theme song?

Is it called Roar? Such a good song! How was the camp?

]]> 9f66b53d1b51e6f64081e80136de9215 Community Member posted an update in the group Ask Me Anything: Do you have questions about cystic fibrosis you’d like to […] https://cysticfibrosisnewstoday.com/forums/activity/p/8683/ Thu, 18 Jun 2026 16:55:11 -0500 Do you have questions about cystic fibrosis you’d like to ask someone who truly gets it?

We’re hosting a special 5-day Ask Me Anything (AMA) in the forums with Caleigh (@fight2breathe) from July 20th to 24th. Caleigh will be sharing from her own CF journey: what daily life looks like, how she copes, and how she navigates care and support.

Drop…

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]]> 0 03cee09cb73a5852a89291d0363ff6d8 Community Member replied to the discussion What is your motivational CF theme song? in the forum Mental Health https://cysticfibrosisnewstoday.com/forums/forums/topic/what-is-your-motivational-cf-theme-song/#post-20189 Thu, 18 Jun 2026 13:38:27 -0500 Reply to What is your motivational CF theme song?

Katie Perry – Fighter .. I forget the name of it. I went to a CFRI retreat once and it was the camp’s theme song that year and ever since it’s been a reminder of strong friendships in the community for me. 😍

]]> f4b9883a3907b496f92a7fd2994a2053 Community Member started the discussion What is your motivational CF theme song? in the forum Mental Health https://cysticfibrosisnewstoday.com/forums/forums/topic/what-is-your-motivational-cf-theme-song/ Mon, 15 Jun 2026 14:00:00 -0500 What is your motivational CF theme song?

Fighting CF is hard, but music has the power to uplift us when we are down.  Since I was about 10, whenever I felt defeated or sad, my mom would play “Don’t Stop Believin’” by Journey. It became my theme song, or motivator, that I would blast in the hospital before operations, or when I needed a cosmic reminder that everything will be okay.…

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]]> cdff04c4bbe3565296092ec298f3c695 Community Member wrote a new item Mon, 15 Jun 2026 14:00:00 -0500 Fighting CF is hard, but music has the power to uplift us when we are down.  Since I was about 10, whenever I felt defeated or sad, my mom would play “Don’t Stop Believin’” by Journey. It became my theme […]

]]> 0 4719a81debf81eb06b545c9c03940894 Community Member started the discussion What are your CF hospital boredom busters? in the forum Support Groups https://cysticfibrosisnewstoday.com/forums/forums/topic/what-are-your-cf-hospital-boredom-busters/ Mon, 08 Jun 2026 13:00:44 -0500 What are your CF hospital boredom busters?

Life with CF comes with frequent hospitalizations, often referred to as “tune-ups.” These hospitalizations can last a few weeks. 

When I’m inpatient, I like to binge crime shows, talk to my friends on FaceTime, and (try to) sleep. When I was young, I used to sell artwork, such as caricatures of my doctors and nurses. I also made a… Read more

]]> ad8d2cecc45850ecfabb1e605542f716 Community Member wrote a new item Mon, 08 Jun 2026 13:00:44 -0500 Life with CF comes with frequent hospitalizations, often referred to as “tune-ups.” These hospitalizations can last a few weeks. 

When I’m inpatient, I like to binge crime shows, talk to my friends on […]

]]> 0 e94274035345b247fa6ac0f28451f75c Community Member posted an update: I wish I can create a Youtube Channel where people […] https://cysticfibrosisnewstoday.com/forums/activity/p/8664/ Mon, 01 Jun 2026 16:16:08 -0500 I wish I can create a Youtube Channel where people can discuss and share their daily life and challenge with CF

]]> 3 df474340bc9afd0074070870169b17b9 Community Member replied to the discussion What is your experience with CF modulators? in the forum CFTR Modulators https://cysticfibrosisnewstoday.com/forums/forums/topic/what-is-your-experience-with-cf-modulators/#post-20170 Mon, 01 Jun 2026 16:03:46 -0500 Reply to What is your experience with CF modulators?

Hi Paul! I’m so glad you found a modulator routine that works for you!

]]> 31db2ec4c7568ee939017fe3637831a2 Community Member started the discussion What are your tips for navigating dating with CF? in the forum Dating, Relationships, and Marriage https://cysticfibrosisnewstoday.com/forums/forums/topic/what-are-your-tips-for-navigating-dating-with-cf/ Mon, 01 Jun 2026 14:00:37 -0500 What are your tips for navigating dating with CF?

Dating is hard; dating with cystic fibrosis makes it harder. Not everyone can handle dating someone with CF. But never forget, you are not a burden. 

Please share any dating tips for the community! How would you recommend telling a new partner about your invisible illness?

]]> 6184455ae3d5c7148c4ae57682b72e18 Community Member wrote a new item Mon, 01 Jun 2026 14:00:37 -0500 Dating is hard; dating with cystic fibrosis makes it harder. Not everyone can handle dating someone with CF. But never forget, you are not a burden. 

Please share any dating tips for the community! How […]

]]> 0 f58960cc8f5dec9d6142374524a1a4c8 Community Member replied to the discussion How do you manage CF-related diabetes? in the forum Treating CF https://cysticfibrosisnewstoday.com/forums/forums/topic/how-do-you-manage-cf-related-diabetes/#post-20168 Mon, 01 Jun 2026 10:49:53 -0500 Reply to How do you manage CF-related diabetes?

I love the Dexcom! I’m glad to hear it’s working well with your pump! I can’t wait for the islet bionic pancreas to release their tubeless pump later this year!

]]> dbc873b364e68401bc02e6870104c58e Community Member replied to the discussion What is your experience with CF modulators? in the forum CFTR Modulators https://cysticfibrosisnewstoday.com/forums/forums/topic/what-is-your-experience-with-cf-modulators/#post-20167 Sat, 30 May 2026 17:21:05 -0500 Reply to What is your experience with CF modulators?

I am on Trikafta since 2021. Had to lower dose to 1 Orange pills a day (no seperate ivacaftor) because of severe mental side effects that lasted 4 years and mysteriously went away within a month after taking a small dose of oral morphine twice a day because of dyspnea.

I depend on the Trikafta completely (fev1 24%). When I forget to take… Read more

]]> d729ea872bdcd2daf0b7558c553b1a0f Community Member replied to the discussion How do you manage CF-related diabetes? in the forum Treating CF https://cysticfibrosisnewstoday.com/forums/forums/topic/how-do-you-manage-cf-related-diabetes/#post-20166 Sat, 30 May 2026 15:08:08 -0500 Reply to How do you manage CF-related diabetes?

I use the omnipod 5 pump along with the dexcom g7 gcm. Which talk to each other and makes it wireless.

]]> 41d43125d0551e8bba60bc33df930484 Community Member replied to the discussion How do you manage CF-related diabetes? in the forum Treating CF https://cysticfibrosisnewstoday.com/forums/forums/topic/how-do-you-manage-cf-related-diabetes/#post-20165 Fri, 29 May 2026 16:54:01 -0500 Reply to How do you manage CF-related diabetes?

I’m so happy to hear that the pump is working for you! What pump do you use? Ive tried the Omnipod and the islet BionicPancreas

]]> aabc7c37d05f9c6759f1ac5a56588f42 Community Member replied to the discussion How do you manage CF-related diabetes? in the forum Treating CF https://cysticfibrosisnewstoday.com/forums/forums/topic/how-do-you-manage-cf-related-diabetes/#post-20163 Fri, 29 May 2026 16:43:31 -0500 Reply to How do you manage CF-related diabetes?

I was diagnosed with CFRD at 12. I am now 43 and use Dexcom and Insulin Pump. I was against the insulin pump for a really long time. I finally started the pump and my A1C stays under 7 consistently.

]]> 3e6f2b1e6f45f9ebaab57d7ff49caf65 Community Member started the discussion How do you manage CF-related diabetes? in the forum Treating CF https://cysticfibrosisnewstoday.com/forums/forums/topic/how-do-you-manage-cf-related-diabetes/ Mon, 25 May 2026 14:00:00 -0500 How do you manage CF-related diabetes?

CF-related diabetes is a common complication for those with cystic fibrosis. 

If you have developed CFRD, at what age did it happen? How do you manage your CFRD?

]]> 7db0bd1cb35039fdccf109bc15e1eda2 Community Member wrote a new item Mon, 25 May 2026 14:00:00 -0500 CF-related diabetes is a common complication for those with cystic fibrosis. 

If you have developed CFRD, at what age did it happen? How do you manage your CFRD?

]]> 0 bf6313188995fc0b5ca5e43c86323604 Community Member replied to the discussion Traveling with CF: Do you have any summer plans? in the forum Diagnosis​ ​Info​ ​and​ ​General​ ​Questions https://cysticfibrosisnewstoday.com/forums/forums/topic/traveling-with-cf-do-you-have-any-summer-plans/#post-20160 Fri, 22 May 2026 16:42:34 -0500 Reply to Traveling with CF: Do you have any summer plans?

How fun! Stay safe and let us know how the rest of your trip goes! <3

]]> 1521be9fbb5afff88673c73092ecbad1 Community Member replied to the discussion Traveling with CF: Do you have any summer plans? in the forum Diagnosis​ ​Info​ ​and​ ​General​ ​Questions https://cysticfibrosisnewstoday.com/forums/forums/topic/traveling-with-cf-do-you-have-any-summer-plans/#post-20159 Fri, 22 May 2026 15:10:10 -0500 Reply to Traveling with CF: Do you have any summer plans?

I’m traveling right now, actually! Six weeks in Ireland, Italy, and Peru.

]]> fd3f98f8faaaed55a6837eb47b56d338 Community Member started the discussion What is your experience with CF modulators? in the forum Cystic Fibrosis News Community https://cysticfibrosisnewstoday.com/forums/forums/topic/what-is-your-experience-with-cf-modulators/ Wed, 20 May 2026 15:59:13 -0500 What is your experience with CF modulators?

These days, many of us take a CF modulator. They can work wonders, but are not a cure. 

Which modulator are you on, and is it working for you? Do you have any questions or experiences with modulators you want to share?

 

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