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? |
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Energy levels
Jan 22, 2020 12:21 pm | Jenny Livingston
Replies: 1
Like many CF symptoms, my energy level is always a bit unpredictable. I can go from having a good amount of energy to having absolutely none without a moment’s notice.
I’m currently in a no-energy phase, and it doesn’t make sense to me. I’ve gotten decent sleep, I’m not overly stressed, and I’m feeling pretty well otherwise. But I’m having a hard time accomplishing daily tasks or keeping my eyes open when I sit down for more than a few minutes.
Do your energy levels wax and wane over the course of the day or week? Do you have any tips to boost your energy levels when they start to drop? |
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WCW: Carly
Jan 22, 2020 07:21 am | Jenny Livingston
Replies: 0
Hey, guys, we’re excited to introduce our first WCW of the year: Carly!
@cccarlylee is 23 and from Idaho. Here are four things important to her story with CF. Be sure to answer her question!
 I was diagnosed at birth after having an emergency surgery for a ruptured meconium ileus. I’ve been exciting from the get go! Thanks to an awesome care team and my mom, I was pretty healthy throughout childhood.
Since I was relatively healthy, I got to keep my CF on the down low. Only my closest friends knew about all the treatments and medications I did. I never wanted to be seen as different and, for the most part, it worked. And then, my rebellious self went away for college — away from my parents, away from my care team, and away from CF.
Of course though, CF caught up. I ended up getting very sick and, because of both CF complications and some mental health issues, I had to drop out of college and move back home. For the last 2 years, I have been fighting for both my mental and physical health. I’ve been hospitalized every 3-5 months. However, I’m back on track to have a very healthy 2020! I was diagnosed Bipolar II in October and finally am on a medication that helps me, and I got access to Trikafta in November.
I am so thankful for my care team, my family, friends, wonderful partner, and the CF community social media has connected me to.
Question: What is something you can do in 2020 to be nicer to yourself when you’re having a hard day? |
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Do You Feel Better or Worse on IVs?
Jan 22, 2020 05:11 am | Bailey Vincent
Replies: 0
I’m going to be honest: I prefer IV Bactrim to oral Bactrim, even though neither are easy to tolerate for long periods of time. The latter does slightly more damage to my stomach than the former, and I often lose too much weight when I’m on it (from feeling ill).
I know some people feel worse on IVS before they feel better, but I normally feel comparatively awesome (especially with how long I pushed this off and how bad I had gotten). I’m now a couple of weeks in, and beginning to feel some of the kickback of “yuck” (mostly in the GI department).
I’d love to know: What is your typical physical reaction to [your average] treatment of IVs? Any symptoms that stand out more than most? |
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Jan 21, 2020 12:35 pm | Jenny Livingston
Replies: 0
I just got home from the dentist. This was a six month follow up, and it’s the first regularly scheduled cleaning that I’d had in a very long time. Honestly, I’m pretty proud of myself for going. Prior to last summer, I hadn’t been to the dentist in over five years. It’s not because I’m afraid of the dentist… it’s because I’m awful at remembering this kind of thing!
And it’s not just dentist appointments. I’m also notoriously bad at going in for yearly pelvic exams, eye appointments, etc. It just seems like I get so wrapped up in doctor’s appointments, treatments, and the daily grind of CF life that the “normal” things are forgotten.
Am I the only one? Do you feel like things outside of your CF care get put on the back burner or are forgotten entirely? |
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WCW: Genesis
Jan 21, 2020 12:16 pm | Jenny Livingston
Replies: 1
Hey CF fam! This week we have Genesis as our WCW. @lxvandme is 20 years old and is from Florida! Here are three things she wants you to know about her life with CF. Answer her question in the comments below!
The medical system has failed me for 18 years of my life. Every time I was advocated for, it was dismissed because my team of doctors that continuously said that because I was born at 24 weeks, it was common to see “asthma” and weak immune systems. So, for 18 years of my life I was labeled with “severe persistent refractory asthma characterized by mucus hypersecretion.” I wasn’t mad when that got shortened down to cystic fibrosis because all of that was getting really annoying to say.
As I grew up , I was active despite the repeated infections and admissions. The effects of having sucky lungs did make being active difficult, but I excelled in almost every sport I played. When I got diagnosed, I was already in a hard place. One year later, it’s only gotten worse. ABPA or allergic bronchopulmonary aspergillosis paired with b. cepacia has taken my lung function down into a place we never expected. Mentally this hit me so hard because I went from playing hours and hours of volleyball daily to barely being able to walk long distances.
As soon as Trikafta was released, my CF team and I automatically knew I needed to get on this drug. While insurance issues are making Trikafta harder to get, my team has been cautiously optimistic after seeing patients needing to stop the drug and that was devastating. When people are diagnosed later in life, there is a misconception that a late diagnosis equals milder disease and they couldn’t be more incorrect. With two serious bugs growing in my lungs, my disease far from mild and at this point treatment options are slim. I’m not sure what’ll happen next so I’m just living life and taking the ride.
What are some myths or misconceptions that you’ve heard about cystic fibrosis?
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How Do You Handle Criticism About Your Health?
Jan 21, 2020 12:07 pm | Bailey Vincent
Replies: 2
QUESTION: How do you handle criticism about your health and body?
I wrote a column discussing my anxiety with encountering trolls online, and can’t help but wonder… how does one become a troll? Do trolls even know they’re trolls?
In my case, the most negative people are often those that are also sick, despite assuming we’d be the most compassionate. We should know, above everyone else, that no one experiences sickness or its impacts in the same way. And, frankly, no one should.
So why do we all criticize one another for being even the slightest bit different? What has that ever achieved in the history of achievements?
Even so, we are all entitled to our opinion. Heck, if someone said I’m a terrible writer, or bad dancer, or had questionable bone structure, or use too many ellipses… I would understand their right to these feelings. However, when someone attacks another for their actual biology- their genetic material and mass- I don’t really get the point?
Can I take that critique and fix my DNA? Nope. Can I make you feel better about what I can’t control (my body), which in no way impacts you and your body? Not really.
I would much rather be disliked for the great many things I need to work on and improve (ellipses not withstanding), than for the matter that doesn’t really matter to most.
What about you? |
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Cleaning up the forums
Jan 21, 2020 11:21 am | Jenny Livingston
Replies: 0
Hello forum friends!
Yesterday we did some cleaning up and reorganizing within the subforums. Hopefully you’ll find that things are a little easier to navigate now. As always, if you have any questions, please reach out to either of the forum moderators (@bailey-vincent or @jennifer-livingston). We are more than happy to help! |
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Has anyone been diagnosed as an adult carrier?
Jan 21, 2020 11:10 am | William
Replies: 2
Hello,
I’m searching for answers and hoping for help from this community. Hopefully one day I can return the favor.
I’m William, 47, lifelong sufferer of…something…I have the Celiac alleles 2.5/8 and CFTR Delta F509.
Lungs are scarred from…something…but I’ve never had that explained. (Tried very hard…) My issues are endocrine-related and immune-related and they’re impacting my digestion and mental health in a way that’s alarming to me and others.
History
I’ve never been able to eat “normal people” food, subsisting for the last few years on broth, heavy cream, and meat. Now I can’t handle solid food and have lost 25+ pounds in a few short weeks. I am writing this because I left the ER just now and I’m still in the same difficult spot (with tens of thousands in billing, I’m quite sure, and a “report” that looks like it was filled in by a child in the other room who was not listening…in other words, I did not get the main answer I was looking for: Do I have CF or not?).
My question is this: How can I confirm or reject a CF diagnosis? I just got out of the ER and they tested my blood, X-ray-ed my chest, and CAT-scanned my abdomen. Other than confirming the lung scarring (first chest X-ray, in 1998, also showed scarring).
My Conclusion…Imperfect as it Is
CF explains everything rather perfectly when combined with Celiac. Celiac incites autoimmune response in digestive system, autoimmune response compromises CFTR in digestive system (and elsewhere?), decades later the system has some sort of major failure (brought on by some additional external stressor) resulting in CF with pancreatic insufficiency and intestinal obstruction.
CAT scan showed no intestinal obstruction; then again, I stopped eating most solid food sometime in December, because of nausea. (I’ve also flushed that portion of the system via enemas.)
CAT scan showed no issues with my organs which is good because I still want to use them! But I don’t think the negative result rules out CF with PI.
The hospital does not run sweat tests or trypsinogen assays and, in fact, they have no ability to test for CF, other than re-running the same genetic tests that (twice) told me I’m a carrier.
So I am happy and sad; happy to be out of the ER but sad because I will now have to continue my search for answers. |
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