#fibros

[feriferfer]

Have you ever done this before? Nah, but since when has that stopped someone from trying? #intubacionnasal #fibros (at Hospital Infantil de México Federico Gómez) https://www.instagram.com/p/CTDkbrWMq8w/?utm_medium=tumblr

[liabledreamer]

Hi! My name is Hannah, and I was diagnosed with Cystic Fibrosis at the age of only 4 months old. 

Every day I struggle to do something that may seem so simple to others.... Breathe. Like me, thousands of people all over the world are diagnosed with Cystic Fibrosis. Cystic Fibrosis is a lung disease that thickens the mucus in your lungs, making every breath a challenge and slowly shutting down your lungs completely. Doctors appointments, hospital stays and procedures are a regular part of life for those living with this illness.The average life expectancy for people living with Cystic Fibrosis right now is 40 years old. I am currently 19 y/o and there is still no cure for this illness. We have made great progress in research towards Cystic Fibrosis. But the fact of the matter is, I am still living with a lung disease and we are still searching for a cure. 

~ PLEASE HELP SPREAD AWARENESS ~

I will be walking in the largest national fundraising event for Cystic Fibrosis this Saturday, June 4th. My goal is to raise money for research and medicine so that one day all my fellow CFers out there and I can #BreatheEasy 

I will put the link to the fundraising page here http://fightcf.cff.org/site/PageServer?pagename=gs_homepage 

If you cannot donate, it would mean so much to me if you could simply share this link and help spread awareness. Every little bit helps. Thank you ~ Hannah 

[asiteforsoreeyesworld-blog]

T-shirt

Thanks to the team at Fibros Promotional Print, I will be the proud owner of a new #didcot4 t-shirt by Tuesday this week.

If they prove popular, we might just add that to the fund too.

[with-br0kenlungs]

I miss having pen pals or friends from out of state that I would skype all the time or send random things to each other times have changed so much and I would kill to have all of that again so like, if you want a pen pal, pick me! (especially if you have Cystic Fibrosis)

[thecodesofconduct]

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Lunching, beaching and shenanigans as they should be... CF style! @dannimichaela #cfcamp #cysters #fibros #sydney #summer

[sisters-with-cysters]

Sorry for the lack of posting lately.

Things got a little busy. I'll try to have a post up at least every few days.

[sisters-with-cysters]

Inept Doctors

As time goes on, I've been starting to see just how inept some doctors and nurses are. Recently, Carly's port stopped working, and upon going to urgent care, some of the people didn't even know how her port worked--so obviously they couldn't help her. Instead, they just gave her a pic line in her hand. Now they're saying it may be a few days until she even gets a call from her doctor (I forgot which doctor) to get an appointment and fix it. It's just frustrating for me because they're supposed to be the ones to help her, aren't they? They're supposed to know what's wrong, and make it better. It make me feel absolutely helpless, because obviously I have no idea what's wrong, and I can't help her. And now, the people who are supposed to do something can't even help.

[sisters-with-cysters]

Hey look at that, this is my beautiful sister.

See that necklace she's wearing? It's this gorgeous handmade thing from Etsy. There were two in stock, and I bought one of them, and I think my mother has the other one. I wish the artist would make more though, because they're like...the prettiest things ever, basically. She wears it everywhere.

Anyways, story time.

A few nights ago, Carly and I went out to Archie's to get ice cream. I, of course, was taking like...17 billion years to figure out what I wanted (cotton candy or java chip?). The cashier kept staring weirdly at Carly, then finally said, "Is that a lung?" Carly was kinda confused, then looked down at the necklace and was like, "What? Oh, yeah, it is." And then it was awkwardly quiet until the cashier was like, "Any reason why you have a lung necklace?" Now, normally Carly just says she has a lung disease, because lots of people don't know what CF is. However, this time, she said, "I have Cystic Fibrosis." Ironically enough, the cashier was also in nursing school, and they'd just recently been learning about CF. Funny, hm?