Dumped because I have CF...
Unfortunately another relationship has ended for me because the person I was dating decided they didn't want to deal with my CF. This is the third time this has happened to me. I do understand that asking someone to take it on is a big challenge for them and I don't want to be with someone who won't be happy. However I am now beyond scared to get rejected again because of something that I can't control. I've talked to my therapist about this but I don't feel she gets it. Those of you who are married or in a relationship, what have you done to make it work? I'm beyond lost at this point. I'm healthy for the most part and I'...
Source: Cystic Fibrosis Adults Forum - November 9, 2015 Category: Respiratory Medicine Authors: kenna2 Tags: Adults Source Type: forums
How do I delete a post?
How do I delete something I posted?
Thanks! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 8, 2015 Category: Respiratory Medicine Authors: JustaCFmom Tags: Adults Source Type: forums
Depression & anxiety (a new way to cope)
Hey everyone :) Hope you all are having a good if not decent week. I can't believe it's November already! Feels great here in Cincinnati today. Unseasonably warm at 73 degrees. Wish it would stay that way. Anyway,
We get a lot of posts asking about how to deal with depression & anxiety so I thought I would post this in hopes of possibly helping a few people if any. Adult coloring has become insanely popular recently. I've seen coloring books everywhere I go so I decided to give it a try. You don't even need artistic talent to color! Coloring is for everyone. It's cheap and easy. There are simple designs available as w...
Source: Cystic Fibrosis Adults Forum - November 5, 2015 Category: Respiratory Medicine Authors: beautifulsoul Tags: Adults Source Type: forums
I need to find someone who did a full gene scan before 2006 to find their mutation
Someone I know needs to prove that this test was available before 2006 for their litigation against the genetic counselor who told them the father wasn't a carrier. Any replies would be deeply apprciated - either to this thread or please PM me.
Thanks so much! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 4, 2015 Category: Respiratory Medicine Authors: JustaCFmom Tags: Adults Source Type: forums
terrible adhesive allergy, possible iodine allergy connection?
My daughter has terrible reactions (not just a little redness...I mean blistering, weeping) to the tegaderm and adhesives associated with the tune ups and PICC line. She also broke out all over her chest last year in what I think was an allergic reaction to the cleaning agent they used for appendectomy, possibly betadine? Iodine? Does anyone know if there is a link? Please, does anybody have any helpful advice, new products, ANY input on this? Tune up is coming, and we are nervous. Thank you for your help. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 3, 2015 Category: Respiratory Medicine Authors: beccasmama Tags: Adults Source Type: forums
What is your dream hospital?
Having CF we can't avoid going in the hospital and since we've got to be there for so long it can get old really quick. What do you envision the hospital having to make the best stay for CFs? And how does it compare to what's at your current hospital?
I can't really say how things are for the CFs cause I just moved and honestly don't know. But I think what would make a great stay would be snacks, treadmill, DVD player, video game system, movies, small refrigerator, ect ..... (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 2, 2015 Category: Respiratory Medicine Authors: leothelioness34 Tags: Adults Source Type: forums
I had an idea.. fitness wearable to help CF in all ways
So I think using some software, some sensors -> specifically the newer technology out (sensors) we can make fitness bands that are specific to CF (but could help others!). And the best part is, I think if we can measure and interpret the data correctly, we can provide CF users with accurate information based on the sensors, which can help improve the quality of life (or help us predict potential failing points in our body). The technology is limited (i don't think it can predict PFTS... yet), but it's just an idea that we may be able to exploit the new sensors that are being introduced into society for our benefit as a ...
Source: Cystic Fibrosis Adults Forum - November 2, 2015 Category: Respiratory Medicine Authors: Dank Tags: Adults Source Type: forums
For those struggling with m abscesses
http://www.sciencedirect.com/science...52396415301109
cystemine is fda approved and available for another condition. While early on study, if nothing is working this might be worth a shot. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 30, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Vertex Conference Call
Vertex had a conference yesterday to discuss earnings. http://seekingalpha.com/article/3617...all-transcript
That is the transcript. Note: This was held for investors but it is public so anyone can hear. I've been stalking for 5 years and this is how I've kept current on the drugs, but be forewarned that the focus is the financials. I only skimmed but two things I heard of note: 1) The second generation correctors are being dosed in healthy volunteers THIS WEEK! 2) Vertex noted that it spent a lot of time picking these next generation correctors which bodes well that they really can work. Vertex had originally sa...
Source: Cystic Fibrosis Adults Forum - October 29, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Toothpaste brands?
So been researching toothpaste brands and wonder if anyone had any input from the dentist or CF doctor related to CF issues? For instance the ingredient triclosan which inhibits bacterial growth but some studies indicate could make resistant to bacteria? What about baking soda once (for a natural anti-bactrerial impact?) Thoughts??? Thanks in advance! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 28, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Opinions on Florida and living with CF; Doctors, Clinics, Medicaid, etc.
My daughter is almost 18 and has CF. She has been on disability for almost a year. I am considering moving to Florida from Ohio. She is trying to decide whether or not to come. I believe the more stable weather will be a benefit to her. She has been seen at Rainbow in Cleveland her entire life. I need info on the clinics in Florida. How they stand up if a lung transplant is ever required. And insurance matters. She is currently covered under her Dad's private insurance (but not sure how long) and medicaid because of her disability. This is a scary move and decision to change providers after all this time so any i...
Source: Cystic Fibrosis Adults Forum - October 26, 2015 Category: Respiratory Medicine Authors: 65RosesMomof2 Tags: Adults Source Type: forums
Getting fat on Orkambi
Has anyone else been gaining weight like crazy on Orkambi? I know weight gain is one of the positives of Orkambi, and I was looking forward to hopefully gaining a few pounds. I have been on Orkambi for about 2 months now, and I have gained about 13 lbs. I don't want to gain any more weight! Right now it is a little funny that I am having this problem, but I may need to get myself on a diet soon! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 26, 2015 Category: Respiratory Medicine Authors: liveitup Tags: Adults Source Type: forums
New collaboration for gene splicing
http://investors.vrtx.com/releasedet...leaseID=938302
this is huge! I've mentioned before out crisp and gene splicing and that they are working with vertex will get t den much faster I think because vertex knows the gene aspect and has the assay to test...likely ten years out but closer and faster every day. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 26, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Help I Need Advice ASAP!
I just moved and have been trying to get an appointment with the center in New Orleans but it's been a headache. They told me they needed a demographic page plus last clinic notes before they could give me an appointment. I called them to see if they got them in the middle of September because she said she'd call me with an appointment once she got that information. They hadn't received that info yet so I called medical records from my old center but they told me they faced the info on September 3rd so I had them fax it again. I waited and I didn't hear anything so I called Tulane back and they got the info but all they s...
Source: Cystic Fibrosis Adults Forum - October 22, 2015 Category: Respiratory Medicine Authors: leothelioness34 Tags: Adults Source Type: forums
Pilots with CF
New to the forum and was diagnosed a year and a half ago with CF at the age of 33. I used the search fuction and found only a few people who have become successful as a pilot. Does anyone have first hand knowledge of the trials and tribulations? After one year of fighting the FAA I was awarded a class three exemption on the medical. I'm currently finishing my hours and should be done in the next month or two. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 22, 2015 Category: Respiratory Medicine Authors: Dsnow1332 Tags: Adults Source Type: forums
