Whoop whoop spread the word guys !!! I wish everyone knew about CF and the issues it brings. Idiots who say these things are either dumb or uneducated. I lost some of my close friends in around 1995 from CF in Australia. So happy TRIKAFTA has just been approved here. Wonderful news. I am a PROUD organ donor and have encouraged those near to me be the same !!!
I have CF too, for the last 2+ years now I've been a much healthier weight( debatably for the right reasons) but, now I have MASSIVE bloated, distension-esque stomach area. If I suck it in to attempt to look 'normal' I can barely breath.
The issue is when CFers don't have any medical ensurance issues. These ensurances pay for EVERYTHING for these people! A patient who is on a ventilator, and who has a trach, cant get vital stuff that they need because they have so many restrictions thanks to the CFers. A ventilator patient who has thick secretions and gets horrible mucous plugs can't get a vital medication that would actually help them. Why? Why do patients who have horrible mucous plugs and who has a tracheostomy can actually die from these plugs. They can't get a medication that would help thin the patient's mucous they cannot get this drug, because only the CFers get it. I get that CFers are sick. OK, I get it. But you don't see CFers with tracheostomy tubes, who are on a ventilator. These patients don't need a ventilator. Not only that, getting a VESt for a patient who is unable to cough well, who has a trach and a ventilator is nearly impossible. WHY??? Because it's restricted to the CFers!! I'm probably losing my vest which has helped me so much, because medicare and medicaid is refusing to pay for the thing, thanks to the restriction to YOU GUESSED IT!!! THE CFERS!!! Another thing? That vest has over 1000 hours, which prooves that I'm using it, however HILL-ROM is going to come and take my vest, because I don't have a diagnosis of CF. Another thing I notice? CFers are always griping and crying about how it's so hard. OK, Grow up and live with it. You have CF. You gotta do your treatments, and you gotta take your treatments. Be thankful that your ensurance is covering all that equipment. Cause they're probably taking my vest since I am not a CFer!!! Yet let's get thi straight. I have a trach, and am on a ventilator. What next Are they going to restrict ventilators to home patients and say that they'll only cover them for CFers? They do that? Us ventilator patients are DEAD!
As much as I appreciate what I assume is a well-intended sentiment, this comment gives off some major sexist-abelist "I wanna love/take care of a dying girl" vibes. 🧐
Don’t know if you know this, but you can also do a port in the inside of the arm. Not all doctors do it, it’s a bit less common, but a good option. The port itself is smaller than the one in the chest, and it’s more durable than a PICC.
I don't have CF I have CFTR dysfunction which is kinda similar. My friends always compliment me for being so slim but to be honest I'd rather be heavier...thanks for the tips ;)
So pretty much, I have a lot of symptoms of Cf, I would tell my mom but I'm scared she won't believe me, can you give me some tips please. Because, I don't want them to get worst, and I once even sneezed and out my mouth we, is yellow, thick, sticky mucus. That's the type of mucus CFers have. Once again, can you give me some tips please.
Your just faking it a persona said it to me and I’m like not to be rude but not all need tubes or have to stay at the hospital it hurt my feelings so I told them to maybe look it up more
Same, there’s so many cases yet it’s rare to find other people with it. I’m 18 in 4 months and I’ve been diagnosed since I was born and my sisters 24 and she’s also been diagnosed since birth.
I'm struggling because I'm in a living situation where gaining weight isn't possible, even with my Gtube. I'm 82lbs and it scares me. And I know people in these comments probably don't care, but I don't have anyone to talk to about my CF problems.
Thank u so much for talking about the beginning bc that's the most important. We all wanna be big or huge but as we all know the road to it is very hard but we need to know that we can get there by just starting. Again thank u so much.
One of the nice things about women with CF is they have lovely voices. Good luck with everything and thanks for the information regarding your diagnosis.
Thanks guys for making this video, I had to recently explain the situation to my husband about why my stomach is so extended all the time why and why it looks like that you know he's not too sure everything about CF just yet we've been married for 7 years but I was only diagnosed at 15 years old so you know it's pretty hard but I had to show him this video so maybe you could understand it better because now I'm 30 years old in March 6th 2019 is when I will officially be 30 years old. So I hadn't watch this video to explain the cystic fibrosis got and what it's all about and why we haven't and it's just a thing we all have this is the fibrosis family has
Yeah Tara I know the feeling of having a feeding tube as well but I had it Taken out about year ago, left another small hole, my second belly button. Lol
For me those exact same things are working. No dairy, no meat, very little gluten, no processed foods and yoga. I would like to add drinking enough water every day to prevent DIOS. I am so happy that a lot of cfers are focusing on diet these days, I think it is essential to our wellbeing. We do not have to live with these issues, there are ways to improve the belly situation! Great video, lots of love from germany!
@@StayingSalty yes I know exactly what it's like to have those gi issues. I had a blockage and had a foot of my bowel removed as well as many other surgeries. But I'm a warrior just like you guys are and we are gonna be here for a long Time.
For me it’s pizza or anything with tomato sauce...And I def need extra enzymes with pizza and anything with a lot of cheese...What helps me is warm peppermint tea ☕️
Brandi, glad you found our channel. Congrats on 29, I'm 37 and was diagnosed at age 3. Please, always feel free to reach out at any time with any questions, thoughts or topics you would like to see! -- Chad
@@StayingSalty yeah i been actually trying to find someone older then me with cf and I'm so happy to see how far we are getting. It's makes me feel more encouraged
This is great news! Way to go on getting out there and spreading awareness! We will have to check it out! We certainly have come a long way from the days of not living past childhood - Chad
Oh man! One of the most JERK things I have EVER said was to a very dear CF Friend of mine, asking her if she was pregnant (after YEARS of trying) only to have the response, "No, it's just CF belly." I seriously had a major 'I'm an A-Hole cry about it with my husband later... I think I cried like 3 times about how inconsiderate I was. Made me so sad. @sabrinawalker
Yo i totally agree with all of this. I think the degree on how sick you are at the moment has a lot to do with it. For me it also has to do with certain foods like diary products or things like soda, or certain fasts foods and such. Usually when im really bloated or just big in the belly, I like to drink some hot tea.
