If you could, would you meet with your representatives in your state to talk about life with CF, about healthcare, or about any issue you’re passionate about?

What issues would you want to talk about?

What state do you live in?

Recently, I hung out near a bonfire with some friends for the first time in a long time. I hadn’t sat by one in a long time so I didn’t think much of it. The next morning, I noticed my chest was tighter than usual. I realized it was probably due to the bonfire.

Have you noticed that you’ve felt similarly? Do you avoid bonfires? How do… Read more

I’ve found that whenever I make what I perceive to be a mistake, the language I use to talk to myself is dehumanizing. I call myself dumb or an idiot or worse. I’ve started to recognize how bad that is for my self-esteem and self-compassion. But whenever a friend vents to me, I’m understanding, empathetic, and nonjudgmental.

 

1. How…

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One of the coolest things my doctor has ever done was give me his phone number. It felt like I could trust him and also gave me comfort that I could reach out if things got bad in a hurry.

1. Do you feel like your doctor is accessible or easily reachable? Why or why not?
2. What are some ways you think this could be improved?

There are pockets of the internet where there is productive discussion to be had about heavy topics (Our hope is that this forum is one of those places!) In the CF community, there are definitely issues that are heated enough that people will express serious disagreement no matter what.

 

1. What do you think is the best way to…

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I remember as a kid, I had a hard time coming up with sputum for CF appointments and hated doing the throat swab. Since being an adult, it’s been less of a problem.

1. Does your kid have trouble coming up with sputum?
2. Do you analyze their sputum culture results? Do you worry about them?
3. Does this affect yours and their experience in clinic?

I remember as a kid, I had a hard time coming up with sputum for CF appointments and hated doing the throat swab. Since being an adult, it’s been less of a problem.

1. Do you have trouble coming up with sputum?
2. Do you analyze your sputum cultures? Do you worry about them?
3. Does this affect your experience in clinic? Like anxiety or anything?

People with CF have to be especially attuned to their electrolyte levels when they exercise.

1. Do you exercise a lot? What type of exercise?
2. Do you sweat a lot?
3. What type of salt replacement therapy do you use?
4. Do you get bad headaches if you don’t replace quickly enough?

1. Do you get anxious about your PFTs? Why or why not?
2. What do you in preparation for it? Both in the days and minutes before?
3. Are your PFTs stable? Feel free to not share about this if you’re not comfortable.

A couple of weeks ago, I did an exercise test for the first time. It was really cool to see what my VO2 max is.

1. Have you ever done an exercise test? Was it routine or for something else?
2. If you’re comfortable, what was it? How did it compare to your PFT?
3. Was it strenuous? Did you have a hard time?

As I’ve gotten older, I’ve noticed that caffeine has affected me more (bummer, I know).

1. Do you drink caffeine? What types – tea, coffee, energy drinks?
2. How does caffeine affect you?
3. (Strangely for me, I’ve noticed it affects me differently depending on what the drink is.) Have you noticed this?
4. Do you notice caffeine interacting…

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We’ve all been told for so long that breakfast is the most important meal of the day. I dunno if I truly believe that but I definitely believe eating a healthy(ish) breakfast is good and important, especially for people with CF. I’ve noticed I get shaky from some nebs and caffeine, but eating helps!

 

1. What do you eat for breakfast?

…

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I remember back in the day in college when I could handle late nights easily. Doing treatments late, going to bed, getting up early wasn’t that difficult.

 

I’ve learned that I can’t handle nights like that anymore and that my body just betrays me in the morning.

 

1. At what age did you realize you started to feel much…

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A divisive topic I’ve seen in the CF community is whether or not it’s ethical to have a child once you’ve had one with CF already (or if the prospective parents know they are both carriers), therefore existing a 25% chance that the next child will have CF. I am a second child with CF. My parents chose to have me 5 years after having my… Read more

I’ve never really, fully camped before. It’s obviously a difficult endeavor to do with CF.

1. Have you ever camped before? Where? (This is more just to get an idea of where all people do some fun things for my own curiosity!)
2. How did you alleviate the burdens of CF? (Finding power, keeping nebs clean, etc.)
3. Do you have any other tips…

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Back in August, I got the Monarch. While it’s been a huge relief in being more portable than the traditional Hill-Rom Vest, it’s still bulky, a bit heavy and uncomfortable to wear, and I also still have to do my nebs so I’m not really any less tied down than before.

1. Do you have the Monarch? Or if not, what chest phys do you do?
2. What…

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One of the universal experiences in CF is coughing in public and coughing in public seems to be one of the most common causes for people to make comments to people with CF in public.

1. What kinds of comments have people made to you in public? Did it bother you?
2. How did you respond?
3. Are you happy with how you responded? Why or why…

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I remember being really upset when I learned that most men with CF are infertile. Men, do you remember the day you found out? How did you feel? Have you thought any more about having kids since then? Do you plan on having kids?

One of the worst days of my life was discovering that CF was a life-shortening disease. I remember being heartbroken for weeks over it.

Do you remember that day? How did you discover it? How did you feel afterward?

This is a safe place to talk about an obviously devastating day.

Alcohol-based hand sanitizer is one of the most important aspects in a person with CF’s toolkit. Do you carry around hand sanitizer everywhere? Or do you just try to wash them as frequently as possible? Do you feel like it helps, both physically and mentally?

I know it’s something I have to get better about, but I really have a hard time wearing a mask in public places. I don’t like being stared at. It’s something I’m working on.

1. Do you wear masks in public places? Do you feel like you have to or do you just like taking the precaution?
2. Do you feel like people stare at you? Does it bother…

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It’s a common experience in the CF community to wonder about resistance and the bacteria in their lungs.

1. Do you worry about resistance?
2. Do you put a lot of weight in your cultures?
3. How do you feel about resistance and the concern in the CF community?
4. Importantly – do you understand how resistance develops? And do these questions…

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I think it’s fundamentally important that we have at least a base understanding of science.

1. Do you feel like you’re scientifically literate? In what ways?
2. What do you wish you were more literate about?
3. Do you feel like you’ve had a chance to learn?

Were you a part of the VX-659 trial? (I’m pretty certain this can be disclosed since they’ve announced the results.) What kind of benefit did you see? Did you have any side effects?

Do you feel okay with knowing Vertex selected to pursue VX-445?

Were you a part of the VX-445 trial? (I’m pretty certain this can be disclosed since they’ve announced the results.) What kind of benefit did you see? Did you have any side effects? Are you confident that this drug will help others?

Patient relationship with their care team is of the utmost importance. Studies have shown that patients who have good relationships with their doctors attend appointments more frequently and better adhere to their treatment plans.

1. What is your relationship with your doctor like?
2. In what ways could it be better?
3. What are some…

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Mutations play a large role in CF – outcomes, access to meds, and more. It can also make people feel lost when they have a rare mutation or a hard-to-fix one.

1. What are your mutations?
2. What is your general health like? (Feel free to not answer if you aren’t comfortable.)
3. What are some things you’d like to better understand about mutations?

We’ve all heard that breakfast is the most important meal of the day. I believe it, but eating a consistent solid breakfast has been difficult for me. I’m not the best cook and I don’t think it’s great to eat heavy sugar cereals every morning.

1. Do you eat breakfast? What do you eat?
2. I’ve noticed I’m not very hungry when I wake up. Are…

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It seems too good to be true that getting consistent good rest could have concrete positive effects on our lives. But it really does make sense. Our bodies and minds need time to rest and recharge. Unfortunately, anxiety and not feeling well can make it difficult to get a good night’s rest. And on top of that, certain medications that… Read more

Habits are hard to break, everybody knows that. Bad habits can be a bit hard to parse since it’s hard to say what’s bad for everybody.

One of my “bad” habits is drinking coffee. I love coffee and I love how it tastes. I drink it black so I avoid unnecessary sugar and fats from cream and sugar, but it can trigger my anxiety some. It can… Read more