Topics in the CF News Today Forum That You Might Have Missed

Cystic Fibrosis News Today Weekly Forum Digest Join the discussion! See below for the latest topics and conversations about CF taking place in our forums. Your voice is needed! New to our forums? Register here.   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? Read More Stigma: Have You Faced It? Sep 22, 2020 05:58 am | Bailey Vincent Replies: 0 Yesterday I wrote about pain medication and the stigma that’s often connected, but it made me wonder… What is the largest stigma you’ve faced as a patient before? Not all of us have faced mental misnomers from others, of course, but sometimes surprising things give pause as CF patients. For example, I sometimes worry about talking about anxious feelings or body dysmorphic undertones, because I don’t want my team to take me any less seriously when I have a physical complaint. What have you worried about sharing the most? Was it mental health- depression, anxiety, etc- or something else? I know this is a sensitive one, but hopefully we can create a safe space to honestly reflect together! Read More Pain Medication: Stigma, Sharing, Stories Sep 22, 2020 05:13 am | Bailey Vincent Replies: 2 Do you take pain medication everyday? I wrote about pain meds on my Instagram account last week, and the pension for stigma in both the medical and chronically-ill community. People are hurting, and they say hurtful things to those openly discussing pain management. I wish we talked about pain medication more, both in our communities and with our healthcare teams. I have been worried that taking a med everyday to make it through this difficult time in my own health journey. I worry about what meds I take, and how, and when, even when they’re meticulously monitored by experts in kind. I worry about how little we talk about the “after”… After the meds aren’t needed or the chemicals change. I know it will work out and all will eventually be well… but I just wish more care and conversation was given, without the worry of personal optics. I know this is a sensitive subject but – if you feel comfortable: What has been your pain medication experience in the past? Have you ever had a difficult time either on or off them? Do you have a pain management specialist, or does your CF team cover those needs? Read More Nighttime Routines: Let’s Share! Sep 21, 2020 07:23 am | Bailey Vincent Replies: 1 Are you a morning person or a nighttime person? I used to prefer doing most of my treatments and healthy steps in the evening, because I am soooo slow in the mornings… But when I was dancing and working at night, this was tricky. Often, I’d neb in the car on the way home and considered my job (teaching dance) as my evening workout, but wouldn’t get home until 10:30 or 11 PM. By then, I was exhausted, and would heat up a microwave dinner lazily and crash out. Things have changed now that I’m not able to dance/teach, and most of my routine is at home. I wish I could say I stretch at night, do everything right, and never skip a nightly neb… but that would be lying. I am finding, however, that I like knocking out as many healthy habits in the morning versus night, which is the reverse of before. What is YOUR ideal nighttime routine? (Inspired by yesterday’s post.) What does it include? Read More Shopping around? Sep 19, 2020 04:49 am | Jenny Livingston Replies: 3 I recently read (in a Facebook group I belong to) that a woman was dissatisfied with her CF center, so she was actively “shopping around.” I’ve been with my CF team for my entire adult life, and truly, I’ve never had the desire to look elsewhere. In addition to that, my CF center is the only accredited center with a several hour drive from my home (it’s about 2.5 hours to drive one way). I suppose I’ve been lucky to be so satisfied with my care that I’ve never felt the need to shop around. What about you? Have you received care from multiple CF teams either by choice or necessity (ie: moving out of state). If you’ve “shopped around” in the past, how did you know when you found the right team? What has your experience been with care at different centers?  Read More Nebulizer Meds: Side Effects? Sep 19, 2020 04:29 am | Bailey Vincent Replies: 4 Yesterday I wrote about changing my lung clearance routine to adapt to pain needs, but today I was wondering: How have your inhaled medications changed YOU? I saw a tweet about how someone looses their voice on Pulmozyme, which has not been the case with me (although I’m Deaf, so technically not the greatest source). But I can feel how Tobi has changed my voice in the past when I’m on it, so now it’s definitely a common occurrence. Have any of your nebulized medications given you notable side effects? And, did you stay on them or adjust/accept throughout the years? Read More COVID Testing: Personal Experiences? Sep 18, 2020 11:40 am | Jenny Livingston Replies: 0 Today, I had my 5th test for coronavirus. Not because I’m symptomatic or we have any reason to suspect that I’ve been exposed. I’m currently participating in a clinical trial, which means that I’ve been getting weekly COVID testing as a precaution before each of my appointments. Admittedly, I was incredibly nervous before my first test. I’ve had extensive sinus surgeries that have left me with some trauma, nerve damage, and sinus structure so “unique” that my ENT has sent pictures of my sinuses to his colleagues. Even having a standard flu swab has caused a lot of anxiety in the past, so I wasn’t looking forward to a procedure that I’d heard described as as “brain swab.” The first time I was tested, I voiced these fears to the nurse performing the test. She listened, then gently did the test, and everything was fine. I barely even felt it! The subsequent tests have been pretty similar — a little uncomfortable, but quick and not at all painful. So, just for fun, I’m wondering if anyone here has been tested for COVID-19. If so, what did you think of the test? I hear that soon, my local clinic will be offering saliva testing. Have any of you experienced that? What are your thoughts on COVID testing?  Read More Morning Routines: How Long Does It Take? Sep 18, 2020 10:41 am | Bailey Vincent Replies: 2 Wow, it has been the Week Of Nebs! I posted about nebulizer machine recommendations yesterday, and today it made me wonder: How long should treatments really take?! What’s your fastest and longest time doing meds? What’s your current average? To expand upon this a bit more and make it broader for those who might not be nebbing a lot lately… In an ideal day, how long would you take working on your health each morning? For example, I would hope that on the other side of surgery I’d spend at least two hours on my physical self (this would include PT exercises, about an hour ballet or Pointe class, some cross-training for stamina, and lots of long stretching and muscle roll-outs), with some treatment time and healthy food choices thrown in. That doesn’t include washing my face (which is my personal meditation time, lol) and the actual To Dos (homeschooling my children, writing work, and onward). This might seem like a really long time to be “working out”, but because dance is my career… it’s actually a very very very truncated routine compared to most professionals! (One of my favorite videos that shows this is here, if you want to check it out). How would your dream morning look? Read More Holidays and family traditions Sep 18, 2020 10:08 am | Jenny Livingston Replies: 2 As we head into fall and the holiday season, I’ve been thinking about the ways in which our seasonal family traditions will be different this year. My extended family is very close and we generally have large family celebrations for all the major holidays. Halloween is a favorite of ours and we usually celebrate with an outdoor carnival party: food, games, costumes and contests. I’m not sure if it’ll be safe or reasonable to keep those plans in light of the pandemic. Thanksgiving this year won’t include extended family crowded around a table, eating and laughing together. Neither will Christmas. And while I understand that these changes are temporary and for good reason (we truly don’t want to put our family members at risk) it’s still a little sad to think about. What are some of your favorite family/holiday traditions? How will those plans and traditions be affected by the pandemic? What will the holidays look like for you?  Read More Neb Machine Recommendations (Please and Thank You!) Sep 17, 2020 11:37 pm | Bailey Vincent Replies: 2 I’ve been talking about nebulizers and clearance routines this week, and I was wondering: What nebulizer do you use or recommend? The one I use right now is pretty standard- it’s a Pari neb I got on Amazon long ago when my last one broke. I used to go through the hospital/insurance to try to save money on nebs, but it takes so long and creates so many more hoops to jump through, that I bought this one outright and moved on with my day. However, this means I couldn’t get the most expensive/fast version, and sometimes I wonder how much time I could save in my day with a better neb? I’d love to know your personal tips, tricks and brand recommendations! Read More