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  • I typed up a whole paragraph in response to this, and for some reason it didn’t post. Technology, hah!

    Anyway, my top pain experiences include 8 days of a debilitating spinal headache as a result of my epidural, the severe pain and breathlessness from multiple blood clots in my lungs, and the time a nerve bundle was hit during an extremely…[Read more]

  • Jenny Livingston posted a new activity comment 19 hours, 23 minutes ago

    Becky, this is incredible! Trikafta has lessened my joint pain and overall body discomfort, but I still get those dang sinus headaches (darn it). I can’t help but wonder what the cause of Kelly’s headaches was. CF does such strange things to our bodies! It’s fascinating to me that Trikafta has had this effect for her. Thanks so much for…

    [Read more]

  • Jenny Livingston posted a new activity comment 2 days, 14 hours ago

    Hi, Ben! Welcome to the forums! I’m Jenny, one of the moderators here along with Bailey whom you’ll be meeting soon. Together, we try to make this an informational, safe, and enjoyable space to talk about all things related to CF. If you need help with anything or there’s anything specific you’d like to discuss, please don’t hesitate to reach out.…[Read more]

  • I’m definitely not a night owl. As I mentioned in response to your morning routine post, I like getting most things done early in the day. I like keeping it as light and easy as possible in the evenings. My nighttime routine consists of a treatment (nebs and vest), snack and nighttime meds, and a second sinus rinse followed by teeth brushing,…[Read more]

    • I am SUPER resentful of nighttime routines too, haha. I hate having to do treatments at the end of the day, when I’m super tired. However, I am enormously a night owl (I wish I wasn’t), in part because I have major major major issues falling asleep. Hadn’t you posted about sleep aids awhile back? Maybe I should soon! It has become a big issue for…[Read more]

  • Jenny Livingston posted a new activity comment 3 days, 17 hours ago

    Coincidentally, over the weekend, my partner also got his first COVID test. He hated it! As you said, I think it’s so much less invasive and uncomfortable than many of the things we’re regularly subjected to, so it seems pretty easy. But for someone who isn’t used to having their sinuses probed, it seems like it’s pretty rough.

    Like you, I close…[Read more]

  • My experience with pain meds has been pretty limited. Even following surgeries, I find that narcotics don’t help much and I feel terribly while on them! When I had severe pain related to multiple pulmonary emboli, I was given a combination of IV and oral pain meds for a short time. A few days later, I opened Facebook to find that I’d posted some…[Read more]

  • 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…[Read more]

    • Okay, so this is bizarre because… Today I had my very first COVID test! (How did you know?!?!) The timing is kismet!

      This is my first one. I’m not working outside the home right now, nor having any symptoms, so haven’t had the need so far. However, I had to get it done today in order to have my next surgery scheduled as quickly as possible.…[Read more]

      • Coincidentally, over the weekend, my partner also got his first COVID test. He hated it! As you said, I think it’s so much less invasive and uncomfortable than many of the things we’re regularly subjected to, so it seems pretty easy. But for someone who isn’t used to having their sinuses probed, it seems like it’s pretty rough.

        Like you, I close…[Read more]

  • Morning is my favorite time of day! I have energy and motivation in the morning that seems to wear off by about 2:00 pm, so I try to fit most of my essential activities into the earlier hours. I spend about 1-2 hours doing things like treatments, working out, sinus care, eating a (usually) well-rounded breakfast with my Trikafta and other meds. I…[Read more]

  • Paul, this sounds delightful and I while reading it, I find myself feeling the holiday spirit, too. Also, it is always evident in your posts how much you love Debbie and the life you have together.

  • My current machine is a Pari Vios Pro. I didn’t specifically choose this one, it was simply what my clinic wrote a prescription for what seems like ages ago. My insurance only covers a new machine every 5 years, and my last machine didn’t last that long. When I was looking for a replacement to purchase out-of-pocket, it turns out this was one of…[Read more]

  • 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:…[Read more]

    • I told my daughters that they should go outside on Halloween and knock on our door. Then I’ll answer the door dressed as one person… send them on their way… then open the door pretending to be someone else (lol), on a loop to “pretend” it’s a normal Halloween.

      To be honest, life is normally so busy for us that we rarely get to prepare for…[Read more]

  • Tobi has always been something I struggle with. It always makes my voice raspy, and sometimes I lose my voice entirely! Hypertonic saline causes chest tightness and also sometimes that raspy voice. I can only tolerate 3% because the higher percent salinity solutions cause too many issues. These are symptoms I’ve learned to tolerate for the greater…[Read more]

  • Jenny Livingston posted a new activity comment 1 week, 3 days ago

    @delsonno9 Hello! I apologize for being late to the party. I see that you’ve met Bailey, and I just wanted to quickly introduce myself as well. I’m Jenny, a 33 year old woman living with CF. As Bailey mentioned, we are here to help and happy to do so. Please reach out if you need anything or if there are specific topics you’d like to chat…

    [Read more]

  • Here are my three things: a razor (this girl is NOT a fan of body hair), mascara, and face moisturizer.

  • Paul, this is fascinating to me. I have friends here in the U.S. who choose to see specialists independent of CF centers for reasons similar to the ones you mentioned here. Again, it’s not something I can imagine since I’ve been so pleased with my care team and feel so well taken care of. Thank you for sharing a bit about your experiences.

    I’m…[Read more]

  • John, I wish we had a better answer. We’ll ask our supervisor, and we’ll keep trying to figure it out. In the meantime, please keep posting and responding. We love reading your thoughts!

  • I’ve recently begun speaking with a young woman who, until our conversations started, had never spoken to another person with CF. She is not the first person I’ve met for whom this is the case, nor will she be the last, I’m sure.

    Growing up with two sisters with CF, plus having opportunities to attend events like CF camp (which I recently…[Read more]

    • I would say I’m somewhere in the middle of the spectrum… Maybe? Honestly, this is a tough question! I have a few really close friends who happen to have CF who I’ve met from writing online (similar to you!) and have maintained throughout the years, but then additional connections that I know on a less intimate basis.

      It’s weird because even…[Read more]

  • 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…[Read more]

    • So I wrote a column awhile back about considering leaving my (then) CF clinic and actually got a fair amount of blowback online. The column was simply considering if my clinic benefited me more than seeing my multiple specialists I have to see regardless of the clinic. I was surprised how mad people became. At that time, my clinic really didn’t…[Read more]

  • Jenny Livingston posted a new activity comment 2 weeks, 2 days ago

    As I’ve already mentioned, I am so excited to hear that you’ll be participating in the keynote! It sounds like this will be an amazing panel!

    I’ve only attended once before, and it’s because I was asked to participate in the planning workgroup last year. So my only prior experience has been as someone working behind the scenes. I loved it and…[Read more]

  • Like you, I try to make preparations to ensure things run smoothly once I’m home. This goes for both lengthy hospital admissions and surgeries (even if it’s a same day procedure). There are few things more frustrating to me than coming home to a mess, an empty fridge, or being met immediately with a to-do list.

    I especially like having extra…[Read more]

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