Patti Rowland

I have a clinic appointment tomorrow (in person, with PFTs) to check in with my doctor regarding the adjustment to my Trikafta dose. If you remember, a couple months ago I lowered my dose in hopes of reducing mental health symptoms that seemed to be related to Trikafta. Two months later, I can say with confidence that my mental health symptoms…[Read more]

Shout Out to The Julia Lyons Foundation!

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For many years, Emily Lyons dreamed of creating a charitable foundation. To understand why, you need to hear the story of another Lyons – Julia Marlane Lyons.⠀
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Julia Marlane Lyons was Emily’s beloved older sister. Julia was only 27 when she passed away, but Emily is grateful for all the time…[Read more]

I wanted to share this here for any of our forum members who might be interested in attending BreatheCon, a virtual event for adults with cystic fibrosis, taking place September 24th-25th.

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BreatheCon is a free, two-day virtual event where adults with cystic fibrosis age 18 and older come together to discuss their unique…[Read more]

Today’s question is brief and straight to the point.

Do you see a chiropractor? If so, what do you feel the benefits are?

I used to see one regularly, but it’s been years since I’ve been (with the exception of the couple times I’ve “thrown my back out” in recent years). I’ve heard mention of people with CF going regularly, and I am…[Read more]

Shout Out to The Capable Disabled!

@thecapabledisabled is a project created by people with disabilities, for people with disabilities. Their content is educational, inspirational and personal. They interview people with incredible stories, providing an outlet to share their experiences living with severe disabilities, and post other…[Read more]

I know that for most (if not all) of us, the pandemic caused interruptions to health care. I’ve resumed in-person appointments with my CF clinic and ENT, but recently realized that I haven’t been to the dentist or eye doctor in well over two years. Under the best of circumstances, I tend to forget these kinds of appointments; the pandemic just…[Read more]

“My cousin had that once.”

“Oh, so it’s like asthma?”

“Do you need a cough drop?”

“I used to know someone who had that…” *past tense*

So often, when I explain CF to someone for the first time, I get responses like the ones listed above. Frequently, I find it to be quite hilarious, although I must admit that I also find it…[Read more]

Shout Out to Travis Flores!

@travisflores is a speaker, writer and producer who, when he was 4-months-old, was diagnosed with CF and given five years to live. Today, he’s a 30 year-old, three-time double-lung transplant recipient who is thriving while living with CF.⠀
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​In 2004, Travis published an award winning children’s book, “The…[Read more]

As mentioned in a post I made yesterday, my daughter had her second dose of the Pfizer COVID-19 vaccine yesterday. She tolerated the first well, with no side effects. This time, she wasn’t so lucky, although the side effects are due to her immune response, which means her body is doing exactly what it should. She woke up early this morning…[Read more]

I typed this out yesterday, but something happened and my post was eaten. Technology is both amazing and incredibly frustrating. Anyway, I look forward to these “weekly win” posts because I love to hear about the good things happening in each other’s lives. I also think that when things are looking dreary and the stresses of an imperfect world…[Read more]

Shout Out to The Lung Association, AB & NWT!

@lungabnwt is a non-profit and volunteer-based charity that raises money to fight lung disease, fund lung health research and support patients in need. They also serve as an advocate on lung health issues with government, industry and the community.⠀
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As a non-profit charity, they raise ess…[Read more]