@jennifer-livingston
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Jenny Livingston replied to the topic Trikafta update and a tough decision…. in the forum Trikafta: Triple Combination CFTR Modulator 2 days, 13 hours ago
Thanks so much for this response, Paul. It’s been an interesting journey; listening to my mind and body have been critical. Thanks also for the reminder to not tell myself stories. I need to drop any expectations and refrain from clinging to any story.
The lack of sleep has been a huge problem for me. For the first 5-6 months after starting, my…[Read more]
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Jenny Livingston started the topic Trikafta update and a tough decision…. in the forum Trikafta: Triple Combination CFTR Modulator 3 days, 9 hours ago
I had CF clinic yesterday and here is the biggest takeaway: sometimes we have to do hard things and it’s okay to have mixed feelings about something.
I’ve talked a lot about the benefits I’ve experienced on Trikafta. I am endlessly grateful for the ways in which it has improved my life with CF. But at the same time my physical health has been…[Read more]
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Jenny Livingston posted a new activity comment 3 days, 9 hours ago
Jessica, hello and welcome to the forum! I’m Jenny, one of the moderators here. Bailey, my colleague, will also be introducing herself when she’s back to the forum after some time off. Please reach out if you ever need help, want to talk about something specific, or would just like to chat. We are so happy you’ve joined us here and can’t wait to…[Read more]
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Jenny Livingston posted a new activity comment 3 days, 10 hours ago
Hello, Susan! Welcome to the forum. I’m Jenny, one of the moderators here. You’ll also be meeting my friend and co-moderator, Bailey. Please don’t hesitate to reach out if you ever have questions or need help navigating the forum. We are happy to help and so glad you’ve joined us here.
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Jenny Livingston replied to the topic Travel tips and tricks in the forum Adults​ ​With​ ​Cystic Fibrosis 4 days, 17 hours ago
William, thanks! This is a great reminder. I used to do this, but had forgotten. I’ve got a clinic appointment today actually, so I’ll be asking for a letter.
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Jenny Livingston started the topic Travel tips and tricks in the forum Adults​ ​With​ ​Cystic Fibrosis 5 days, 14 hours ago
As I prepare to travel this weekend, I’m reminded of how unpleasant it can be to pack and prepare for trips. Well, I find it rather unpleasant, maybe others don’t mind the work. When I traveled more frequently, I had a pretty efficient system. I knew what to pack, the best way to make everything fit, and which items I could forgo. This time… as…[Read more]
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Jenny Livingston started the topic Age appropriate CF responsibilities in the forum Adults​ ​With​ ​Cystic Fibrosis 6 days, 14 hours ago
At what age did you begin taking over CF responsibilities like preparing your own nebs, sterilizing neb cups, or administering your own treatments? What about making appointments, scheduling prescription refills, or dealing with insurance companies? Prior to adulthood, were you involved in all aspects of your CF care?
If you are a caregiver,…[Read more]
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Jenny Livingston replied to the topic What Do You Need TO DO Today? (Plus, Surgery Preps) in the forum Adults​ ​With​ ​Cystic Fibrosis 1 week ago
Your level of preparedness and pre-surgery organization is something to be admired. I hope the prep pays off and your recovery is smooth.
My to-do list today includes all the things I haven’t done while I’ve had family here. Housework, some writing and catch up on projects I’ve neglected, laundry, etc. I’m also preparing for a big doctor’s…[Read more]
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Jenny Livingston started the topic Monday Shoutout: CF Lifestyle Foundation in the forum Adults​ ​With​ ​Cystic Fibrosis 1 week ago
📣 Shout Out to CF Lifestyle Foundation (CFLF) 📣â €
@cflifestyle assists in providing avenues toward healthy and active lifestyles for people with CF through recreation. Diagnosed with CF at birth, founder Brian Callanan knew from an early age that he wanted to help others who struggled with the challenges of life with CF. Through his pe…[Read more]
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Jenny Livingston posted a new activity comment 1 week ago
David, have you considered contacting the CFF Advocacy center to see if this is something they can help with? I wonder if there is a way they can get involved.
https://www.cff.org/Get-Involved/Advocate/ -
Jenny Livingston started the topic How do you handle the feeling of overwhelm? in the forum Adults​ ​With​ ​Cystic Fibrosis 1 week, 4 days ago
I have some family in town and I am overwhelmed. That’s an understatement, but to say “I’m going absolutely crazy,” doesn’t sound very kind to my family. I love them so very much. But, wow, they’re exhausting to be around sometimes.
This is definitely the most social thing I’ve done since the beginning of the pandemic and it’s like I’ve…[Read more]
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Oh HECK yes. I just felt this to an extreme degree the last two days, while doing long medicals days for surgery coming up. (Including a scary port procedure where they’ve covered my face up during much of it and I thought I was going to utterly freak out. That’s a Deaf person’s living nightmare!) I honestly was so overwhelmed just talking about…[Read more]
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Jenny Livingston replied to the topic "Risk Assessment in an Ever-Changing World" in the forum Coronavirus (COVID-19) and CF 2 weeks ago
Oh, wow, Paul! That is terrifying! We’re currently seeing a rise in cases in my state, mostly in unvaccinated individuals. 99% of our recent COVID deaths have been unvaccinated people. These things are reminders that we are far from over this pandemic.
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Jenny Livingston replied to the topic "Risk Assessment in an Ever-Changing World" in the forum Coronavirus (COVID-19) and CF 2 weeks, 3 days ago
Paul, I agree that these diagrams can provide a false sense of security. I remember seeing a diagram similar to this one last summer that said outdoor barbecues with friends and family would be considered very low risk — something I strongly disagreed with.
I do however think it’s an interesting exercise, as you said. The points illustrated…[Read more]
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Jenny Livingston posted a new activity comment 2 weeks, 3 days ago
Brandi, hello and welcome to the forum! I’m Jenny (33 with CF), one of the moderators here. You will also be meeting my friend and co-moderator, Bailey. Together we strive to make the forum a fun, educational, supportive place to be. If you have any questions, need help navigating the forum, or have something specific you’d like to discuss, please…[Read more]
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Jenny Livingston started the topic CF and loss of smell in the forum Adults​ ​With​ ​Cystic Fibrosis 2 weeks, 3 days ago
In response to a recent topic that asked about our favorite summertime scents, all of the people who commented mentioned their trouble smelling. Personally, I have no sense of smell. It’s been this way for at least a decade, but even before that, my sense of smell was never very strong.
I had always assumed that loss of smell was pretty common…[Read more]
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Jenny Livingston replied to the topic Hot Topic…. It's Really Hot Outside in the forum Adults​ ​With​ ​Cystic Fibrosis 2 weeks, 3 days ago
Judy, I think it’s so interesting, too! My sister (who also has CF) has a better sense of smell than I do, but still has a lot of trouble. I knew it was fairly common, but this thread really seems to highlight the issue.
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Jenny Livingston started the topic "Risk Assessment in an Ever-Changing World" in the forum Coronavirus (COVID-19) and CF 2 weeks, 5 days ago
I recently read this post on the CF Foundation Community Blog and thought it was relevant to some of the conversations we’ve been having here: Risk Assessment in an Ever-Changing World | CF Foundation
Included in the article, this risk assessment tool (which represents the author’s personal risk assessment) is a helpful way to think about…[Read more]
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Jenny Livingston replied to the topic Hot Topic…. It's Really Hot Outside in the forum Adults​ ​With​ ​Cystic Fibrosis 2 weeks, 5 days ago
Favorite taste? Lemonade or pickles (not together). I don’t generally love lemonade but on a hot summer day, I love it. Pickles are always a favorite of mine and the heat makes me crave them like crazy.
I have no sense of smell, so… I’ll skip this one.
Favorite feeling? Water. Being in water, dipping my toes in, or even just sitting on the…[Read more]
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Jenny Livingston replied to the topic Dealing With Medical Trauma in the forum Adults​ ​With​ ​Cystic Fibrosis 2 weeks, 6 days ago
I can understand this so well, Bailey. Oftentimes, I don’t even realize how traumatizing something was until I’m lying awake in the quiet moments after the storm has passed. I was always hesitant to label this, thinking “we all go through hard things” and also believing that terms like PTSD were reserved for veterans of war or severe…[Read more]
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Jenny Livingston replied to the topic Sunday Morning (18) in the forum Adults​ ​With​ ​Cystic Fibrosis 3 weeks ago
As I read this, coffee half gone on the side table next to me, I find myself agreeing with you about priorities. I joked a little with Bailey in a recent response to her post about anxiety, but as I’ve been experiencing an increased level of anxiety and desire to withdraw, I’ve found a lot of comfort in focusing on the here and now, the things I…[Read more]
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Jenny, this is huge news to know and consider… Wow.
I know a few of our friends in the community have paused Tri because of anxiety and mental health, so you feel like another case-study who’s expressing the same. Who’s saying “this might not be worth it… yet”.
I think it’s brave and impressive to do so with all the positive hype around the…[Read more]