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What's it like to die with CF?
this is a terrible question, but i was curious to know what its like to die with CF. what does it feel like? is it a peaceful death? i have cf btw (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - December 16, 2014 Category: Respiratory Medicine Authors: Enzo2311 Tags: Teenagers and Young People Source Type: forums

Going to the doctor for a sweat test rcmndtn.
Im going to the doctor this week to try and get a recommendation for a cf sweat test. Im worried they may think Im crazy, but I'm so frustrated that I dont know what else to do. Since a child I have been getting sinus infections and bronchitis frequently. My doctor diagnosed me with asthma and put me on antibiotics and that worked for a while. I'm now 22 years old (female) and have started going downhill since 16. I know cystic fibrosis is usually diagnosed as a child but i was not tested at birth and I have read that some milder mutations do not.become severe until later in life. Anyway at 16 I started having severe pain ...
Source: Cystic Fibrosis Teenagers and Young People Forum - November 12, 2014 Category: Respiratory Medicine Authors: plainjane Tags: Teenagers and Young People Source Type: forums

Scar tissue
I've been in the hospital for a PICC line 6 times with the lines all in my upper arms. I was wondering if they would start placing the lines elsewhere eventually when to much scar tissue builds up. Can anyone help me? Thanks! latebloomer (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - October 25, 2014 Category: Respiratory Medicine Authors: latebloomer Tags: Teenagers and Young People Source Type: forums

If I were to go to a doctor and go through the process of attaining a Medical Card...
If I were to go to a doctor and go through the process of attaining a Medical MARIJUANA Card, is it a pretty big guarantee that I would get verified by the doctor and approved by the state off of Cystic Fibrosis being my only Medical Issue? (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - October 9, 2014 Category: Respiratory Medicine Authors: jrocco Tags: Teenagers and Young People Source Type: forums

CF patient needs
Hey everyone, I am currently working together with a company that is working on developing a drug for Cystic Fibrosis. I am writing my thesis with them so it is my task to find out more about the disease and about the patients' needs, to be able to have as many insights as possible in the development process. They want to especially target problems with drug resistance. It would be great if some of you would be interested in answering some questions for me and giving some insights into your daily struggles, as you know best what kind of problems are most relevant and need to be addressed. We can either have a quick skyp...
Source: Cystic Fibrosis Teenagers and Young People Forum - August 6, 2014 Category: Respiratory Medicine Authors: LenaS Tags: Teenagers and Young People Source Type: forums

Smoking Marijuana to breathe easier
So about a month ago I got my official notice from the state saying I'm a legal Medical Marijuana User registered in the MM Registry. There are many times that I smoke Marijuana just so I can breathe easier, I notice that it is exactly like my Inhaler. I know what you're thinking about the smoking part, well when I have the money, i plan on either making Edibles or getting a Vaporizer in place of smoking. But for now, the safest thing that I currently do is I smoke out of a water pipe, and instead of the Marijuana holder (bowl), I use a triple filtered pipe (I put 3, tiny metal mesh filters in the pipe). So the place the b...
Source: Cystic Fibrosis Teenagers and Young People Forum - July 26, 2014 Category: Respiratory Medicine Authors: Enzo2311 Tags: Teenagers and Young People Source Type: forums

Medical Marijuana
Hello. I have Cystic Fibrosis, and I was curious to know what your opinions were on CFers who use Medical Marijuana as a medicine to aide in Cystic Fibrosis. I want to know the benefits, the downsides, opinions, and facts about Medical Marijuana and Cystic Fibrosis. If you're a parent of someone who has CF, would you allow your child to consume Medical Marijuana? If you're a person with CF, would you use Medical Marijuana? When I say use, I mean smoke, "vape", consume (through eating), or any other way that it can be used. (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - June 23, 2014 Category: Respiratory Medicine Authors: Enzo2311 Tags: Teenagers and Young People Source Type: forums

Need friends as I struggle thru this thing called life
Hi (: My name is Hannah, I'm 17 and I have cf df508. I've always loved to talk to people about all the things that go on with having cf. Going through a bit of a rough patch in life right now, like I'm fighting a battle that I can't win. so I would love to talk to some people that maybe feel the same way. (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - June 4, 2014 Category: Respiratory Medicine Authors: Hannah Poiry Tags: Teenagers and Young People Source Type: forums

I need help translating my testosterone results!!
I know you're not doctors I just need help though. Test. Total : Ref range 250-1100 I'm in 462 Test. Free : Ref range 46-224 I'm in 98.8 Test bio available : Ref range 110-575 I'm in 211.8 Sex hormone binding : Ref range 10-50 I'm 17 Globulin albumin Ref range 3.6-5.1 I'm 4.7 *test. = testosterone (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - March 29, 2014 Category: Respiratory Medicine Authors: Enzo2311 Tags: Teenagers and Young People Source Type: forums

When and how do you tell your child about surgery?
You know, I always struggle with this. We have an upcoming outpatient sinus surgery. At least it's hopefully outpatient. My little guy hates PICC lines and IVs to the point of hysteria at times, but hopefully there won't be much of that this time since its outpatient. I don't want him walking through his school day and playtimes fearful. But I don't want to scare the bejesus out of him by saying "Good Morning, we're going to the hospital for surgery today" either! I tend to discuss the issues he's having for a week or so before, and propose surgery as a potential solution, letting him come to the conclusion ...
Source: Cystic Fibrosis Teenagers and Young People Forum - March 3, 2014 Category: Respiratory Medicine Authors: Gammaw Tags: Teenagers and Young People Source Type: forums

Can testosterone cream still deepen my voice?
So I'm gonna ask my dr about this. Will it deepen my voice and make muscle gain much easier even though it's a cream instead of an injection? (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - February 28, 2014 Category: Respiratory Medicine Authors: Enzo2311 Tags: Teenagers and Young People Source Type: forums

Testosterone Replacement Therapy
I wanna talk to my primary doctor about testosterone replacement therapy. But I have a few concerns, I'm turning 19 in 2 months and I started puberty late and what I wanna know is will testosterone still deepen my voice this late? Also, is the injectable version the same as the cream or deodorant version? I fear needles as big as you need for testosterone and the thick gel you must inject. I'm not scared of needles, just the thickness of the syrup and the needle (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - February 28, 2014 Category: Respiratory Medicine Authors: Enzo2311 Tags: Teenagers and Young People Source Type: forums

People with Cf can make a wish at make a wish foundation?!?
I never knew this! I'm very healthy, so would this exempt me from participating? If not, how do I do this and what are the limit of a wish? Like can they grant me the wish to going to culinary school or going on a world wide trip to different countries? (Source: Cystic Fibrosis Teenagers and Young People Forum)
Source: Cystic Fibrosis Teenagers and Young People Forum - February 26, 2014 Category: Respiratory Medicine Authors: Enzo2311 Tags: Teenagers and Young People Source Type: forums

I'm not a normal teenage guy
I swear I'm not normal. I feel like I'm an "old soul", literally. I have traditional values, I find women back in the 30s-50s era the most beautiful, and I hate how women dress s.ty and have piercings. I even hate ear piercings. The thing that makes me most abnormal, is I don't really think about sex, and I really only want a girlfriend so I can have a companion, not for sex or anything like that. If I didn't have cf I'd love to live in the 30s and 40s era. I also hate saying that women are "hot", instead I prefer the words pretty and beautiful. But here's where my main question comes in, I have cf, I...
Source: Cystic Fibrosis Teenagers and Young People Forum - February 26, 2014 Category: Respiratory Medicine Authors: Enzo2311 Tags: Teenagers and Young People Source Type: forums

mom of a 16 yr old daughter
Junior Member Join DateFeb 2014Posts1 Hi I am also new to this site. I am a mom of a 16 yr old daughter. She has ddf508, mostly weight issues. She is 5'2, 94 lbs. She has a g tube and takes 2-3k calories at night. She also does hyper tonic, pulmozyme, albuterol and the vest. Her dr says she has very mild chrons, but she never has any symptoms and hasn't taken the pentasa for a while. She has maintained her weight and height and fev of 72-4 for the past yr without any hospitalizations. They want her to be at 100lbs. I feel like her GI dr always wants to do unnessecary tests. Now he is saying her lack of weigh...
Source: Cystic Fibrosis Teenagers and Young People Forum - February 19, 2014 Category: Respiratory Medicine Authors: heathercrittendon Tags: Teenagers and Young People Source Type: forums