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CF Patients Improve Lung Function with Elexacaftor Combo, Data Show

Jan 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?

Your Disease Process: Which Organ Hurts Most

Aug 11, 2020 08:35 am | Bailey Vincent

Replies: 0
If you had pick one organ that’s impacted the most by your disease process… Which is it?
And, in doing so, which doctors feel the most important members of your team?
Mine has undoubtedly been my stomach (as I wrote about recently on Instagram with some less-than-flattering photo memories), or- perhaps more specifically- my whole digestive system. I’ve had more intestinal surgeries than I can count, and am down a colon, large intestine, gallbladder, and beyond.
Because of this, I was extremely close with my colo-rectal surgeon and my GI team… until the former retired, and the latter moved to another specialty. I was crushed. And, though I’ve been working to find suitable replacements and carry on, it doesn’t feel “the same” just yet because I truly trusted them so much.
My new CF clinic has been amazing in terms of lung care, medicine maintenance, and amazing holistic mind-body treatment as a whole (I truly feel so lucky to be with them), but any time biliary backfires or major GI malfunctions happen… I’m still supposed to see those specialists.
I have more thoughts on this tomorrow, but for now, my question is: Which organ hits you hardest, and how many specialists do you see?

The Future: Who Are You Without Sickness?

Aug 10, 2020 10:31 pm | Bailey Vincent

Replies: 2
Who would you be if you weren’t sick?
That’s a hard question, isn’t it? I like to think I never think about “what ifs” or letting sickness “stop me”, but in reality, if it weren’t for my health, my life would look different. That’s just the way it is. I wrote about how much I hate identifying as just one thing on my Instagram a couple of days ago, but the subject can be painful to admit.
I am certain I’d have had a baby with my husband, and I’d assume I’d be working more right now as a writer and dancer than I’ve been able to do during this modified quarantine. (The extreme pain in my spine- exacerbated by sitting and dancing, specifically- is really putting a damper on things.)
But I also wonder who’d I’d be in the broader sense? I’d likely have completed my degree in a faster fashion. Perhaps even followed different pursuits all together (like veterinary science). I’d hopefully have traveled at least once in my life (because of medical bills, I’ve still never been able to leave the country, even though it’s my singular bucket list dream).
What do you wish you could do one day that you missed the chance to do?

CF: A whole body disease

Aug 10, 2020 04:05 pm | Jenny Livingston

Replies: 0
I frequently hear CF referred to as a lung disease. While I understand that for those who aren’t informed about CF, calling it this is a quick and easy way to describe it. But also, calling it this can be incredibly misleading. As we know, CF is a whole-body disease!
I have friends within the community who have never been hospitalized due to lung issues, but regularly have GI-related hospitalizations. Personally, my sinuses have been far more problematic in recent years than my lungs have been. CF is such an individualized disease and the ways in which it manifests itself are as unique as each of us living with it.
In what ways does CF affect your body? Do you have other organs that are affected more than your lungs? What symptoms do you have that differ from the “classic” explanation of CF?

Listening To Your Body: Has It Ever Lied?

Aug 10, 2020 04:33 am | Bailey Vincent

Replies: 3
I know we are told to “listen to your body”… but sometimes I feel like mine lies.
I have a few examples and I’d love to know yours!
One is when I spent weeks thinking my back was the source of my pain (about two years ago) and it ended up being my pancreas and liver in distress instead. It took passing out in New York City unexpectedly and my eyeballs turning yellow to realize that something was not right (and of course, was hospitalized for a stretch thereafter).
Another time is when I felt completely “fine” but my doctor told me to go to the ER because of troubling kidney levels in my labs. I kept apologizing to the nurse because “I don’t feel as sick as I normally do when I go to the hospital”, and felt I shouldn’t be there… but they ended up being right (and I was hospitalized for acute kidney failure for a stretch thereafter).
Once I knew that my stomach felt “off” and I was pooping a lot of blood, but I was genuinely surprised when an endoscope found upwards of half-a-dozen ulcers inside, considering I wasn’t in that much pain.
Sometimes it swings the other way, of course. I know something is wrong and have to wait for medicine to prove me correct. I always want to do an “I told you so dance” when my instincts are right because it feels so good to trust in myself… but, often, my instincts are completely off kilter, or pain deeply displaced.
Am I the only one who ignores “warning signs” sometimes, because they aren’t always correct?

Serious question: do you find it difficult to breathe in a mask?

Aug 07, 2020 05:20 am | Jenny Livingston

Replies: 0

Here I am, once again posting about the thing I swore I was done posting about. But I have a serious question, and this is a community uniquely qualified to answer it.
A few weeks ago, after reading several claims that masks restrict oxygen intake and people with respiratory illnesses could be putting themselves in danger by wearing them, I conducted a little experiment. I wore a variety of masks for 15-20 minutes at a time, while periodically checking my O2 saturation. To make things more interesting, I increased the intensity of my breathing by walking around my yard watering plants, doing dishes, taking a load of laundry both up and down a flight of stairs, jogging in place, and doing a round of squats. (I was very serious about this experiment!)
What I found was that even when my heartrate increased, my oxygen levels never dipped. They stayed between 97-98 regardless of the type of mask or my level of activity. However, when I shared these results, I had a couple friends message me to let me know that they actually do experience desaturation and extreme breathing difficulties.
So here’s my question… (and remember, this is a completely judgement free space, so please be honest).
Do you find it difficult to breathe in a mask? Do your oxygen levels decline when you wear one? Are you someone who experiences complications when wearing masks?

What’s Your Caretaker Experience?

Aug 06, 2020 04:31 pm | Bailey Vincent

Replies: 2

Have you ever had to be a caretaker?
My partner has had two oral surgeries in the last two weeks and I’ve been a complete nut about taking care of him. I’ve lost sleep. I made him a schedule of meds and hung it on the fridge. I’m tracking his progress more diligently than either of us have ever thought about my own antibiotics or treatments or surgeries (lol).
I posted a video on my Instagram about how much appreciation I have for caretakers… but I was wondering how many patients have had to be both?

Resiliency and other qualities

Aug 06, 2020 02:05 pm | Jenny Livingston

Replies: 3
A friend recently told me, “You’re one of the most resilient people I know.” Honestly, I take that as a huge compliment! My resiliency is something I’m proud of, and I believe CF is what has instilled the most strength, drive, and hardiness within me.
I’ve heard people say, “I wouldn’t be who I am today without CF.” While this might sound a bit cliché to some, I completely agree with the sentiment!
Are there parts of your personality that CF has instilled or magnified within you? Has CF helped you develop qualities that you are proud of? Are there specific lessons you’ve learned from CF that have strengthened you?