@edinboro
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Jenny Livingston started the topic Resources and Roadblocks in Healthcare in the forum Adults With Cystic Fibrosis 1 week, 2 days ago
As patients navigating the healthcare system, I think we are oftentimes more aware of cracks in the system than those who make administrative decisions. We know what areas are lacking and where more resources are needed because we’ve experienced what it’s like to not have them.
In your healthcare/chronic illness experience, what have some of…[Read more]
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Jenny Livingston wrote a new item 1 week, 2 days ago
As patients navigating the healthcare system, I think we are oftentimes more aware of cracks in the system than those who make administrative decisions. We know what areas are lacking and where more resources are
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Jenny Livingston replied to the topic Acknowledging grief and depression in the forum CF and Depression and Anxiety 1 week, 6 days ago
Luisa, we’ve spoken about this a little bit, but I want to again express my condolences and love for you and your family. Your experience with your aunt reminds me so much of my own experience with my grandfather a little over a decade ago. He passed away within a very short time of his cancer diagnosis, and I had the honor of being in the room…[Read more]
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Jenny Livingston replied to the topic Let's talk about burnout in the forum Adults With Cystic Fibrosis 2 weeks, 1 day ago
Tim, you mentioned several things that could single-handedly cause burnout! It sounds like the last couple years have been quite difficult. I’m glad you’ve got each other, supportive nurses and staff, and family. I always find comfort and rejuvenation in family relationships as well.
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Jenny Livingston started the topic Let's talk about burnout in the forum Adults With Cystic Fibrosis 2 weeks, 3 days ago
In recent days and weeks, I’ve spoken with several friends and family members who’ve said that they’re experiencing major burnout right now. “Burnout” is typically understood to be the body and mind’s response to increased or prolonged stress. For me, it generally manifests in symptoms like restlessness, insomnia, exhaustion, lack of motivation,…[Read more]
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Jenny Livingston wrote a new item 2 weeks, 3 days ago
In recent days and weeks, I’ve spoken with several friends and family members who’ve said that they’re experiencing major burnout right now. “Burnout” is typically understood to be the body and mind’s response to
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Jenny Livingston started the topic BioNews Seeking Cystic Fibrosis News Today Columnist in the forum Adults With Cystic Fibrosis 3 weeks, 1 day ago
Hello, forum friends! BioNews is currently seeking to fill a CF columnist position. Please click the following link for more information and to apply if you’re interested.
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Jenny Livingston wrote a new item 3 weeks, 1 day ago
Hello, forum friends! BioNews is currently seeking to fill a CF columnist position. Please click the following link for more information and to apply if you’re interested.
Cystic Fibrosis News Today Columnist Position
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Jenny Livingston posted an update 3 weeks, 2 days ago
@jpaul I just wanted to check in as it’s been a bit since we’ve seen you here on the forum. I hope you’re doing well, enjoying your time with Debbie and little Buddah. 🙂
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Hi Jenny,thanks for asking! Indeed I have been absent for a while.
As I mentioned earlier, I was on the waitinglist for a kidneystone surgery (URS). This happened last week and it went well. Only it took a lot of my energy, physicallly ad mentally, and I am still recovering from that.-
I am so glad to hear that it went well! I wish you a full and smooth recovery. Rest up and we’ll look forward to hearing more from you as you feel able.
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Jenny Livingston replied to the topic What are your thoughts when traveling by plane? Do you find it overwhelming and difficult? CF Columnist Discusses her fear or flying in the forum Adults With Cystic Fibrosis 3 weeks, 6 days ago
I hadn’t read this article yet, so I’m especially glad that you shared it here! It was very relatable. Since being on Trikafta, my doctor has given her support for me to travel without my Vest — as long as my health is stable and I won’t be gone too long. Being able to do this has felt so freeing! Without fail, I used to always get pulled aside…[Read more]
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sarais var and
Luisa Palazola are now friends 4 weeks, 1 day ago -
Jenny Livingston started the topic Mental Health Check-In in the forum Adults With Cystic Fibrosis 1 month ago
How often do you ask yourself how you are feeling and then pause to genuinely consider your response?
Mental and physical health are so intricately tied, but I find that especially during times of increased physical health needs, it becomes easier to neglect some aspects of my mental health. In the past couple of weeks, I’ve had to i…[Read more]
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Jenny Livingston wrote a new item 1 month ago
How often do you ask yourself how you are feeling and then pause to genuinely consider your response?
Mental and physical health are so intricately tied, but I find that especially during times of increased
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Jenny Livingston replied to the topic How my treatment routine has changed since Trikafta in the forum Treatment routines, medicines, and the like 1 month ago
Isn’t it wild how different things are? I think it’s awesome that you’ve been able to reduce treatments so much. My treatment routine really hasn’t changed to be honest. I still do 2 treatments a day and increase to 3+ when I am sick or congested. I find that I still REALLY need my nebulized albuterol treatments each day. Along with those, I do…[Read more]
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Jenny Livingston replied to the topic Has any doctor changed your life? in the forum Adults With Cystic Fibrosis 1 month, 1 week ago
Paul, what a lovely illustration of Dr. Weinberg and the influence he’s had on your life. I’m sure he’d appreciate these words and knowing that you still carry him with you.
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Jenny Livingston replied to the topic Has any doctor changed your life? in the forum Adults With Cystic Fibrosis 1 month, 1 week ago
Luisa, I love this question and think it’s great that you still have that connection with Dr. S. I immediately thought of several people who’ve deeply impacted my life, but I’ll try to narrow it down to just a few for this response.
One of my current CF doctors (we’ll call him Dr. L for the sake of anonymity) has both saved and changed my life.…[Read more]
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Jenny Livingston started the topic A quick COVID check in in the forum Coronavirus (COVID-19) and CF 1 month, 1 week ago
Well, friends… it finally happened. Last week, I tested positive for COVID. My symptoms were pretty mild to begin with, but my doctor still strongly recommended Paxlovid (a COVID-specific antiviral). I’m still testing positive, but I feel quite well. I feel grateful to have made it this far into the pandemic before catching it, now that we hav…[Read more]
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Jenny Livingston wrote a new item 1 month, 1 week ago
Well, friends… it finally happened. Last week, I tested positive for COVID. My symptoms were pretty mild to begin with, but my doctor still strongly recommended Paxlovid (a COVID-specific antiviral). I’m still tes
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Jenny Livingston replied to the topic Medical gaslighting in the forum Adults With Cystic Fibrosis 1 month, 1 week ago
Ziv, it sounds like you are a great self-advocate! Keep using your voice to push for the things you need; it can be hard to do at times.
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Jenny Livingston started the topic Recent Favorites/Fun Activities in the forum Adults With Cystic Fibrosis 1 month, 2 weeks ago
So far, this summer has been full of activity for my family. We’ve spent time at a semi-local amusement park, enjoyed several days at the lake, had out-of-state family come to visit, and are currently getting ready to head out on a small weekend getaway. I’m so grateful that circumstance and my health have allowed all these things to hap…[Read more]
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