I want to make friends with people who understand me.
Hi there I'm Isabel and I'm 16 going on 17 in 2 months. I was just diagnosed with CF last year about 7 months after I began becoming sick. It's been a crazy year since it all started and I never new my life would change so much. I can't play my favorite sport anymore, my life plan has become difficult because of school, and even though I was just diagnosed I am in a severe state. Last year my lung function Dropped to 20% and 5 months later went back to 100. Now which is 8 months later I am at 50%. I stopped doing my treatments and taking my medication, I don't know I just don't want to do them anymore, I gave up on them. I...
Source: Cystic Fibrosis Teenagers and Young People Forum - August 2, 2015 Category: Respiratory Medicine Authors: IsabelSlays Tags: Teenagers and Young People Source Type: forums
Embarrassing questions about sex
I know I can ask my doctor this but I am a little embarrassed to ask so I thought I would try here first. I have done searches but cannot find the answer to this questions....is it safe to give oral sex to my girlfriend or can it cause me to get sick? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 2, 2015 Category: Respiratory Medicine Authors: knottstreet Tags: Adults Source Type: forums
Great option for getting started with exercise
This article offers a great way to get started with exercise. We all know exercise is so important for CFers and short, high intensity exercise has been shown to be really beneficial to all kinds of people. The method talked about in this article seems easy to follow, doesn't require special equipment or a gym and could be adapted to all fitness levels. I know I'll be giving this a try on days when I don't make it to the gym.
http://well.blogs.nytimes.com/2015/0...have-fun/?_r=0 (Source: Cystic Fibrosis Exercise and Fitness Forum)
Source: Cystic Fibrosis Exercise and Fitness Forum - August 1, 2015 Category: Respiratory Medicine Authors: jaimers Tags: Exercise & Fitness Source Type: forums
Travel question (a little wierd)
So we are going on a trip to across the country . Getting ready packing, daughter with CF has a slight cold. Few coughs, did complain of a sore throat this am, went away with drinking fluids. If we were staying home I would not be concerned at all; would just keep an eye on her. But; we will be flying etc. I was wondering if it would be really weird if I packed my stethescope in my luggage; just in case things go south. I do listen to her sometimes(I'm a nurse). Wondering ii would cause a problem with screening for security. THough I will be bringing her VEST, nebs, meds compressor...Is it silly? Kind of like if I...
Source: Cystic Fibrosis Families Forum - July 30, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Families Source Type: forums
Weekly pill container
Nothing says it's the end of the week like an empty pill container! Is it just me or does time just fly by? It seems like I just filled my meds a few days ago. How many of you have weekly storage or do you just take them straight from the bottle? I never had a weekly container until after my transplant. It's highly recommend so you don't forget to take your very important anti-rejection meds everyday. I think it's a good way to teach the young ones about their meds. Thoughts? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 30, 2015 Category: Respiratory Medicine Authors: beautifulsoul Tags: Adults Source Type: forums
so frustrated...major drop in lung function so fast
Has this happened to anyone else? I was always quite healthy with CF..the occasional exacerbation, but oral antibiotics took care of it. FEV always around 60-70. Then, two months ago, I got pretty sick. Fevers, the whole bit. The fevers and chills went away after two weeks of IV antibiotics, but now I still feel like crap (lung wise)! I never really did feel better. My lung function went down to 34% and is staying there. I was put on prednisone for 16 days. That is done now, and it did nothing. I started symbicort at the time I started prednisone too, and I'm still on that. I went in today and the lung function only went u...
Source: Cystic Fibrosis Adults Forum - July 30, 2015 Category: Respiratory Medicine Authors: sasha Tags: Adults Source Type: forums
Fibrosis in the stomach lining.
Can anyone give me any insight on whether fibrosis found in stomach lining is DEFINITELY CF or not?
My daughter's GI did a scope and biopsy last Friday and received the results today. She said they found "fibrosis in the stomach lining" and she would have to do further research to find out what that meant. I, of course, could not stop myself from googling and over and over found my queries leading to CF. They also found reactive changes of the esophagus. She is 19 months old with IgG-deficiency, they were doing the scope to look for evidence of celiac's. She has been chronically constipated since we switched fr...
Source: Cystic Fibrosis Families Forum - July 30, 2015 Category: Respiratory Medicine Authors: twinmomIM13 Tags: Families Source Type: forums
Vertex updates
Vertex had an earnings call yesterday and here is the transcript. The Q&A at page 3 has the most interesting stuff. This is a call with investors, though, so trigger warning--it's talking about the $. But I always find interesting tidbits on what's going on. The studies with Parion (sp?) sound promising and also that 3-4 next generation correctors will be in clinic in the next year.
http://seekingalpha.com/article/3372...p=qanda&l=last (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 30, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Is there any fb pages for mom's
Hi just wondering if there is any pages or groups for cf mom's!! I have an 11 yr old and 12wks with #2. Thanks :) (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - July 30, 2015 Category: Respiratory Medicine Authors: missmary083 Tags: Pregnancy Source Type: forums
661 study initiated for heterozygotes
http://finance.yahoo.com/news/vertex...200100167.html
vertex just announced initiation of the 661 trial for those with one copy of df508 and another gene not believed to benefit from kalydeco. When I get a chance I'll try to pull clinicaltrials link. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 29, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
New here. No diagnosis. Questions about testing.
Hi. I know that you all, unfortunately, have a lot of experience and knowledge about CF so I hope you don't mind me crashing your party. :o
My son just turned 18 yrs old. A while ago, he brought this white bubbly rash on his palms to my attention. You know where I'm going with this. I did some googling and brought him to the dermatologist. He immediately confirmed my amateur diagnosis of Aquagenic Wrinkling of the Palms. My son said that they really start to hurt after his shower and the skin just falls off. The doctor prescribed some Aluminum Chloride solution to apply to his palms but my son never uses it. He has high f...
Source: Cystic Fibrosis Adults Forum - July 29, 2015 Category: Respiratory Medicine Authors: Stacey James Tags: Adults Source Type: forums
New here. No diagnosis. Question about testing?
Hi. I know that you all, unfortunately, have a lot of experience and knowledge about CF so I hope you don't mind me crashing your party. :o
My son just turned 18 yrs old. A while ago, he brought this white bubbly rash on his palms to my attention. You know where I'm going with this. I did some googling and brought him to the dermatologist. He immediately confirmed my amateur diagnosis of Aquagenic Wrinkling of the Palms. My son said that they really start to hurt after his shower and the skin just falls off. The doctor prescribed some Aluminum Chloride solution to apply to his palms but my son never uses it. He has...
Source: Cystic Fibrosis Families Forum - July 29, 2015 Category: Respiratory Medicine Authors: Stacey James Tags: Families Source Type: forums
Dating another CF person
Just curious if anyone else has dated or is dating another person with CF? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 28, 2015 Category: Respiratory Medicine Authors: semnle34 Tags: Adults Source Type: forums
Report from Europe: Ivacaftor Real World Results
http://www.cysticfibrosisnews.com/iv...m_medium=email (Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum)
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - July 28, 2015 Category: Respiratory Medicine Authors: Imogene Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums
Vest system 103
Has all tubes cords and an adult medium vest, 550 takes it (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - July 28, 2015 Category: Respiratory Medicine Authors: Andrea Phelan Mercure Tags: Airway Clearance Techniques Source Type: forums
