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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?

Pets: Who Are They?

Oct 12, 2020 12:14 pm | Bailey Vincent

Replies: 3

I’m sure we have posted about this before, but today I could not help myself…

What pets do you have and what are their names and personality quirks?

I ask this because- while recovering from and posting about surgery all dang week- my animals have brought me so much joy (as they always do). I was once told to give up my cat years ago (by a Pulma) and I did not, because the psychological happiness seems well worth the limited risk of allergy. Since then, my lungs have improved from a myriad of things, but I’ve continued to have animals.

Do you ever worry about the negative impact of pets on your health? Do you feel the positives outweigh the negatives?

I obviously do, but I totally understand if someone doesn’t. For example, I don’t want a big dog at the moment, because I’ve had so many surgeries and have so many vulnerable stomas and sore spots that I just don’t want to risk getting knocked over or jumped on (on a frequent basis).

My current zoo includes Odile, our calico cat (named after the black swan in Swan Lake), my deaf kitten Baryshnikov (named after the iconic dancer, of course), our very large and loving bunny, Jete (named after the ballet step/word in French), our two fish, and my many hermit crabs (all with ballet names as well). All of our large pets- the cats and bunny (who is larger than the cats)- are rescues. Our bunny is free-roam, which means she is out and about in the house all day long, and rules the roost for the most part.

What about you?

Parents, Memories, More

Oct 12, 2020 05:34 am | Bailey Vincent

Replies: 0

What is one of the most important things your parents ever taught you?

I’ve been thinking a lot about everything parents of CF patients do and endure, and how hard it can truly be. My parents didn’t have to knowingly “raise a child with CF” since I was a late diagnosis, but they do have to love one now, and continue to do so all the time.

If I had to distill one of the best bits of knowledge my Dad taught me throughout the years, it’s more of an attitude than an actual phrase. He is definitely a “self made” type of guy, and – despite losing his Dad at a very early age and not having the typical degrees and accreditations he’d like- he’s one of the most successful, creative and intelligent people I’ve ever met.

My Mom is full of phrases, on the other hand, and loves to say “It is what it is”, which (even when it drives me crazy) is often a way I look at things now. Pouting and pausing didn’t get me very far in our house, so I had to “suck it up and drive on” (another of her phrases).

What about you? Or, if you ARE a parent of a kid with CF, do you find yourself repeating any classics from whomever raised you?

Siblings with CF

Oct 09, 2020 09:50 am | Jenny Livingston

Replies: 0

When people learn that my sister also has CF (and that we grew up with a third CF sister, before she passed away) many are curious to know if/how we practice cross infection prevention protocol.

When my sisters and I were young, the dangers of cross infection were not yet known by the medical community. Like most siblings, we shared our lives without any concern about the germs we might be sharing. It wasn’t until we were older that we learned of things like the 6-foot rule and maintaining distance between others with CF. At this time, my sister and I cultured the same strains of bacteria, so we still weren’t too concerned.

Flash forward several years to adulthood. My sister had been away to college, moved across the country, and started her family. She and I both began culturing very different strains of bacteria, with a variety of antibiotic resistances, that we knew might be damaging to one another. This is when we realized we needed to change our approach.

Now, when we see each other (which is only once a year) we implement a variety of precautions. We don’t stay in the same home, ride in the same car, share utensils or prepare food the other may be eating. We wear masks if we’re indoors together for any length of time. We’ve had to realize that even though we are family, our risk of cross infection does not change.

Fortunately, my sister and I are very close despite our physical distance. We haven’t felt that these precautionary measures have changed our relationship. However, we love to imagine the day we can safely hang out with each other. For both of us, Trikafta has changed the type and amount of bacteria growth we each have. This is so encouraging! It is our dream that one day, maybe years from now, we’ll both have clean cultures and we’ll be able to (safely) have a girls trip with our daughters.

I know some siblings with CF who do not choose to take cross infection precautions. I’ve been told that life is too short to not regularly hug my sister (and I get it… that is sad). But she and I both believe that this is a small price to pay for each other’s health. What are your thoughts? Do you have a sibling with CF? How do you choose to approach cross infection issues together?

Building a Neb Station (CF and Home Decor)

Oct 09, 2020 08:06 am | Bailey Vincent

Replies: 1

I talked a bit about mobility aids this week, and about pets in the home, which made me wonder about your personal interior design strategy when it comes to sickness.

Mobility aids make think of my very best friend who is an Occupational Therapist. She is constantly thinking about how to improve someone’s quality of life as an OT, and how to make their “living” feel more worth living despite seeming setbacks.

Many OTs recommend rearranging aspects of your home to fit your current needs (whether using a shower chair if you’re weak from transplant, or moving your bed downstairs if you can’t handle the climb), and I was wondering…

Has your home decor been impacted by CF?

How organized is your home for your medical needs? Any tips and tricks? If willing, I’d love to know about your “neb station” or where you house your CF paraphernalia?

Trikafta Side Effects

Oct 08, 2020 06:47 pm | Gary Levin

Replies: 3

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…