CF Patients Improve Lung Function with Elexacaftor Combo, Data ShowJan 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? |
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Mobility Aids and Invisible IlnessOct 07, 2020 01:19 pm | Bailey Vincent
Replies: 1
As I continue to heal (and stick with this “surgery theme” of the week), I keep wondering how many of you have used mobility aids before?
I am using a walker post-surgery, and upgrading soon to a cane for long distances, but honestly, I think I might be “hands free” for the most part pretty soon. I can be weird about using wheelchairs even when I need them (after surgeries), and often refuse mobility aids for no major reason. Maybe it’s because of shallow dancer pride, or my own fallible notions of “being strong”, but mobility aids (and handicapped stickers) have never been friends of mine, now or in the past.
I know this has a lot to do with my own internalized ableism, and of that I’m ashamed. I’m trying to reflect deeply on this deep fault, but I’m also trying to be honest about said faults.
In all honesty, how do you feel about mobility aids and the concept of “visible” illness? Has having a mostly “invisible illness” shifted your thinking? |
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Is Everything Connected?Oct 07, 2020 01:15 pm | Bailey Vincent
Replies: 7
Since posting about my surgery last week, a lot of people have asked: “Is that connected to CF?” and I’m left trying to explain how “everything is sort of connected to CF”. Even though my CF is defined as atypical in terms of genes, I find that everything eventually intersects.
In my opinion, the degeneration in my spine is likely due to malnutrition from years of undiagnosed CF (oh how Creon has helped my soul, lol), CF related bone issues, and maybe even impact from years of coughing, straining, and dancing. Of course, that’s just me connecting dots more than anything else.
What health problems or symptoms have you had that don’t seem ‘connected to Cf’? |
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Dating and relationships: When do you mention CF?Oct 07, 2020 05:12 am | Jenny Livingston
Replies: 3
When I was young (and arguably, rather dumb) CF had little impact on my dating life. I was quite healthy, had never experienced major health issues, and could easily “hide” my disease if I wished. I dated a bit throughout high school and got married when I was very young (19 years old). He knew that I had CF, but at that time, even I was unaware of how much it could and would affect our lives.
About a decade later, I found myself divorced, going back to school, managing my health (which had become much more precarious and a full-time job in itself) and raising a child on my own. Entering the dating world seemed more daunting than exciting at the time. I could no longer hide the fact that I was battling CF, nor did I want to. I’d reached a point where I was completely comfortable discussing the many aspects of this disease. My ex-husband struggled to deal with the challenges we faced because of my health. I needed to know that a potential partner was aware of how much CF could impact our lives and that we’d be able to work through those trials together.
When I joined a dating app, more than once I was ghosted as soon as I mentioned CF. When I met my current partner, I was very upfront about having CF. In fact, I was fairly certain that I had overshared on our first date and that he’d never want to talk to me again. Instead, he took it upon himself to research and learn all that he could about CF. It wasn’t long before he asked if he could attend a clinic appointment with me. Four years later, we’re still together and he is my biggest supporter. It turns out, the right person for you won’t shy away because of something like CF! But I understand that it can still be scary to open up about it.
I know that some people choose not to disclose information about CF right away. Others want to share that information immediately. There are many valid reasons for either approach. When did/do you talk about CF in a new relationship? Has a relationship ever changed when you mention CF? Do you think there is a “right moment” to talk about CF with a potential partner? |
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Surgery Updates and Physical TherapyOct 06, 2020 04:38 pm | Bailey Vincent
Replies: 3
Hello forum friends! I have been gone for a week while in the hospital for surgery, and am trying to catch up on life, work, and forum action. How is everyone?
I guess I’ll kick off my week by just talking about surgery and mobility. The surgery I had last week was aimed at relieving pressure on my nerves and removing a disc in my back, so that I could (hopefully) get feeling and control back in my toes. I’m also having weakness and loss of control in my hands too, which doesn’t fully track, but hoping it resolves on its own. If not, we will run a few more tests in a week or two to see why. For now, I’m supposed to do… well, nothing!
Other than following BLT protocol (no bending, lifting, or twisting, hold the bacon), I am not even allowed to do PT for two weeks. After the two weeks, we will add in home physical therapy, but the BLT goes for awhile. Considering how much I twist just to communicate in ASL with my family across a room or reach to grab something from a side table… it is already SO much harder than I imagined!
Question For You: Have you ever had to work with a physical therapist before, and what were your mobility goals at that time? |
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Trikafta Side EffectsOct 06, 2020 04:10 pm | Gary Levin
Replies: 2
My 32 year old son started the drug and his PFT went from 70% to over 90% in less than one week. He stopped coughing and also improved his activity level considerably. He is also a CF diabetes patient and was started on insulin. He gained 20 pounds over two months. He had some debilitating side effects, insomnia, involuntary leg jerking. He stopped the drug for a week and the symptoms ceased. Eventually his doses were altered. We still have much to learn about dosing. The drug is promising… |
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