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Luisa Palazola started the topic Acknowledging grief and depression in the forum CF and Depression and Anxiety 4 days, 22 hours ago

Lately, I have been struggling with a deep depression. In January my Aunt was suddenly diagnosed with cancer and died about three weeks later. This was my first time witnessing someone actively dying and there was something beautiful and spectacular in seeing the life cycle take place in front of me.

However, since she has passed I’ve found m…[Read more]

Luisa Palazola started the topic What are your thoughts when traveling by plane? Do you find it overwhelming and difficult? CF Columnist Discusses her fear or flying in the forum Adults With Cystic Fibrosis 2 weeks, 3 days ago

CF News Today Columnist, Nicole Kohr, recently wrote about her fear of flying. You can read her column here.

She has been offered various opportunities to travel to advocacy events, but her fear of flying can be an obstacle. That fear isn’t unfounded, either. She taps into the difficulties that come with someone who is immunocompromised (…[Read more]

Luisa Palazola started the topic How my treatment routine has changed since Trikafta in the forum Treatment routines, medicines, and the like 3 weeks, 3 days ago

I recently got sick and had a bit of a change in mucus production. Because I am on Trikafta, I don’t feel congested often – so feeling congested felt a bit disorienting.

I hooked myself up to the Vest, which gave me a bit of pause to reflect on then and now.

Then: I started Trikafta during the trials in 2018. At the time, I couldn’t affor…[Read more]

Luisa Palazola replied to the topic Sunday Morning (68): What about the Kidney? in the forum Adults With Cystic Fibrosis 3 weeks, 4 days ago

Our body’s in house filtration system! They really don’t draw a whole lot of attention until they do. I’ve had a few run-ins with kidney stones alongside an autoimmune disease (henoch schonlein purpura) that caused me to be super cautious of my kidney function.

Perhaps it would be worth it to look into Chinese/ Eastern medicine’s interpretation…[Read more]

Luisa Palazola started the topic Has any doctor changed your life? in the forum Adults With Cystic Fibrosis 1 month ago

This morning I ran into my pediatric pulmonologist – it had been about 4 years since I had seen him, and wow what a wild reminder of my journey. Dr. S has been one of the most influential figures in my life. Partly because he saved my life multiple times throughout my adolescence. But, I think what left a greater impact was his hope for me a…[Read more]

Luisa Palazola replied to the topic What do you wish doctors understood about living with CF? in the forum Adults With Cystic Fibrosis 1 month ago

I agree! My pulmonologist framed that for me at a young age, saying that every single cell in my body was affected. I now take this everywhere I go. I also wish folks would acknowledge the mental impact!

Luisa Palazola replied to the topic Medical gaslighting in the forum Adults With Cystic Fibrosis 1 month ago

I agree! It sounds like you are really pushing for yourself! It’s tough and I think the pandemic has made medical settings even more frazzled, but we need to use our voice!

Luisa Palazola replied to the topic A (re)introduction in the forum Adults With Cystic Fibrosis 1 month ago

Hehe, thank y’all! I am excited to be back!

Luisa Palazola started the topic A (re)introduction in the forum Adults With Cystic Fibrosis 1 month, 1 week ago

Howdy guys!

It’s been a while since I was here — so let me (re)introduce myself! I am Luisa and I am a 28-year-old with cystic fibrosis. Like many folks, my CF story is long and full of peaks, valleys, and hills. I was actually a late diagnosis at eight years old after continuous pneumonia. I faired well until high school, where I developed…[Read more]