Forum Replies Created

  • bailey-anne-vincent

    Member
    March 15, 2021 at 11:58 am in reply to: Monday Shoutout: Gunnar Esiason

    Gunnar was doing a lot of powerful advocacy regarding the vaccine and CF patients having (or, rather, needing) better access than what they’ve/they’d been given.

  • bailey-anne-vincent

    Member
    March 15, 2021 at 11:57 am in reply to: This isn’t what I expected…

    As I was reading, I kept getting a feeling of dread, expecting you to say: “And my numbers dropped”… and then you said the opposite. And maybe that proves your point? I am so used to this being a “progressive disease”, that even when some of us have access to a drug that’s truly working, and find success… my mind has not adjusted yet? I am SO excited for you and couldn’t think of a more deserving person to see positive news for once!

    Follow Up Question: Can you do something to celebrate? Truly celebrate? (I think we are used to hiding our triumphs or feeling guilty for celebrating… but you have earned a proper cheer!)

  • bailey-anne-vincent

    Member
    March 15, 2021 at 11:45 am in reply to: Sunday Morning (again)

    I couldn’t agree with Jenny more… Can we look forward to this weekly? Funnily enough, I kept your Sunday morning post from last week OPEN on my laptop- and I am someone who definitely closes down all her tabs (lol)- so that I could 1) be reminded of it because I found it comforting, and 2) I wanted to use it as inspiration for my own post today!

  • bailey-anne-vincent

    Member
    March 8, 2021 at 12:06 pm in reply to: Sunday Morning

    Wow, this is stunning. I absolutely feel so honored to get read posts like this (I want to beg “more more!”) Thank you so much for taking the time to write this

  • bailey-anne-vincent

    Member
    July 7, 2020 at 3:55 pm in reply to: Just found out that our baby has CF

    Ashley, Congratulations on your baby! How has your pregnancy been feeling so far? You received such a plethora of amazing advice here from parents of CF kiddos, or fully grown healthy CF adults, that I thought I could quickly give you some encouragement from my own path?

    First, I didn’t know I was sick until I was a young adult (late diagnosis), so adjusting to treatments, meds and repairing a lot of the damage that had been done in my ignorance was an undertaking. One positive perspective to embrace, should you feel so, is that your little one will have the ability to be knowledgeable, informed, and confident from the start! I would suggest making treatment times something to “look forward to”, if and when that time comes. In knowing this ahead, you can geek-out as a Momma and plan for positive ways to naturally integrate healthy habits into your little one’s life!

    I love all of the insight about finding forums (like this one), support groups, and so on. As Jenny mentioned, some can be sort of toxic at times (I avoid the Facebook groups like the plague), so take your time finding “your people”. I follow people on Instagram who handle sickness in the same way I hope to handle it, and disengage with those that add to my anxiety. I think that’s an important component of being thrust into any new community: guard your heart, go slow, and find those that truly encourage you!

    One advantage, however, of not knowing I was sick when I was younger, is I never felt like my childhood was any different. I was able to dance, play, climb trees, be a wild child, and I truly believe (looking back) that is some of what kept me healthy for so long. Dance has been a huge part of my mental and physical health, so I would encourage your babe to play, participate, and find activities that fuel their passion once they’re old enough. Staying active and motivated is a HUGE part of dealing with any adversity in life; one we often forget

    Like everyone above said, it really is possible to have a fulfilling beautiful life (I’m the mother of 2 girls, and Jenny- who commented above- is the mother of one!), but I also think it’s okay to take the time to feel whatever you need to feel too. If you need a day or two to grieve the path you didn’t expect to travel, or need someone to vent to if you’re feeling overwhelmed.. We are here for you!

  • bailey-anne-vincent

    Member
    July 6, 2020 at 11:06 am in reply to: Hello again!

    How weird is it that we BOTH are the youngest of 5 kids? We have too much in common

  • bailey-anne-vincent

    Member
    January 21, 2020 at 10:29 am in reply to: Has anyone been diagnosed as an adult carrier?

    William, wow, what a pickle you’re in. I am so sorry you’re dealing with this. I know that so many people struggle in the healthcare system for years trying to find answers, and that the feeling of “knowing something is wrong” when no one will listen is truly so scarring.

    Although I am not a physician nor an expert, I can say that working with a CF clinic to get definitive answers is of course the best case scenario. CF centers know how to look for CF variants or lesser known mutations, as well as the sneakier impacts on the body that an ER doctor may not. In my experience, ERs are best for broken bones and acute issues (like if someone cut off your arm). If they can’t re-attach your arm… they are probably not going to probe for answers. You need a physician who wants to help find a diagnosis, or – in the least- a path to treatment that can improve your quality of life.

    Even if your answer is not CF, you do deserve having someone truly search on your behalf. Everyone does. A CF center can run sweat tests, as well as genetic sequencing if they feel it’s called for. Of course, you can’t just walk into a CF clinic without being accepted, so your first step might be finding a really knowledgeable PCP who wants to help you find answers, and asking their opinion on what to do. They could refer you to a pulmonologist, who could perhaps refer you to a CF center.

    It definitely is not an easy path to try to figure out poorly health, abut I always say “life is short”, so you might as well politely advocate and ask others to help find solutions along the way. Show up with documentation of your scarring and history. Express your need to be helped. And hopefully, with any luck, the right person will step up to do exactly that.

    And, in the least, we are grateful you have a safe space to discuss your concerns with us here! So thank you for expressing them

  • bailey-anne-vincent

    Member
    December 4, 2019 at 1:38 pm in reply to: CFTR Modulators and Reproductive Health

    I would be so so so curious to know people’s answers!!! I know a fair amount of CF moms (including me), which is always so encouraging to know

  • I think that all research is good!!! And since not everyone can take the newer groundbreaking drugs (myself included), or some aren’t candidates or don’t have access… We need to keep looking for answers in as many places as possible!

  • bailey-anne-vincent

    Member
    December 3, 2019 at 11:01 am in reply to: Building trust in a healthcare setting

    I definitely have had full trust in doctors before and then been disappointed when they dropped the ball… but have also had powerful, positive physician experiences too.

    This week, I was frustrated because I trusted one of my doctors to help me write an RX for new feed supplies to a new home health company. I’ve gone back multiple times in person, we discuss it… and then nothing. I finally called the home health care company to see if they had heard from the office, and they hadn’t. I was so discouraged. I’m losing weight and need feed supplies… but I feel so powerless! Luckily, the home health employee got super frustrated for me and called my doctors office and pushed them. And, it worked!

    I’m so grateful they did that for me, but get so disheartened that it can takes weeks and months to get something so critical done, and that my own voice often means so little. And that, even as someone who generally trusts too many people… makes trust HARD