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
Could it be CF in my 14 yo?
My son is 14 years old, weighs 78 lbs and is 4'10". He has had a cough for 2 years now and asthma among other things have been ruled out. He has had pneumonia twice and bronchitis once in this time. He is currently under the care of an endocrinologist because of his growth issues. He is falling farther and farther behind. His latest labs show his FSH to be very low and his LH to be low but not out of range. His vitamin D level continues to stay low despite supplements for the last year. It is currently at 21. He has always struggled with constipation and very large BM's. As an infant he had the same cough he has now ...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 21, 2015 Category: Respiratory Medicine Authors: snowborden1 Tags: Newly Diagnosed Source Type: forums
Fish oil
Do you take? What brand do you take? I do give fish oil daily to my daughter. In the past I had bought Nordic Naturals. last time I just got what was at the drug store. Thinking of going back to Nordic Naturals...What types do you use? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 21, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Adults Source Type: forums
Qvar 1 or 2 a day?
So DS doctor wants to up his qvar or rather has. She gave us the choice of a higher dose 1 a day or same dose 2 a day. I asked adv and disadvantages and whether better to do 2 a day which seems intuitively like t would be better but she said it s no different. Bu what I wonder is is that a clinical test no different like the albuterol inhaler versus nebulizers which studies show no different but cfers in practice will say the nebulized version works better? Or is it truly no different? We've been doing 2 a day because I have the meds left but in the evening DS is already exhausted and bouncing off the walls as am I so ...
Source: Cystic Fibrosis Adults Forum - October 20, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
IV ball options?
Hi,
I was just curious, are there any of those IV balls (eclipse?) available for PA medicines? Specifically meropenem? Just wondering for next time I need IV's. I'd really like to be able to work during the day next time without much interruption, so I'm hoping there are options for the portable IV meds rather than the standard IV bag/pole.
Thanks! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 20, 2015 Category: Respiratory Medicine Authors: rubyroselee Tags: Adults Source Type: forums
question about sweat test results
Hello everyone, my 11 week old daughter was recently diagnosed with c.f. and I had a question about the sweat test.
First a little background - at 2 1/2 weeks old our ped gave us the news that our daughter's prenatal screening had found she had 2 gene mutations (the d508 one and another that only one other person has ever been diagnosed with 1331n). They then made us wait til she was 12 pounds to get the sweat test. So earlier this week we had the test done and her levels were at 102, which the doctor said was very high and definitely positive. He said that the levels don't necessarily determine how severe a person's symp...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 16, 2015 Category: Respiratory Medicine Authors: Martina Banks Tags: Newly Diagnosed Source Type: forums
Giving newborn salt
Hello everyone, my 11 week old daughter has just been diagnosed with c.f.. The doctors told us we need to start giving her 1/8th tsp of salt everyday. The problem is they told me to give it to her straight (wet my finger, dip it in salt then put it in her mouth a few times a day) and not to mix it with any water or my expressed breast milk. I guess they don't want her to associate feedings with a negative taste. I have been following their instructions so far but she absolutely hates it and screams when I give it to her, which usually makes her cough from being so upset. Anyways, I was just wondering if any other parents o...
Source: Cystic Fibrosis Nutrition Forum - October 16, 2015 Category: Nutrition Authors: Martina Banks Tags: Nutrition Source Type: forums
Depression CF related
Hi. Just wondering how many of you or your loved ones with CF suffer from any form of depression. Years ago, I was prescribed Paxil by my CF Clinic doctor after breaking down in tears during one of my early visits. Later after seeing a mental health professional, I was described Adderall, after they diagnosed me as being ADD. They also gave me Xanax to sleep, and I was on this roller coaster of ups and downs for years, until I quit everything on my own. I still suffer from bouts of depression and it obviously affects my willingness to adhere to treatments and take car of myself, in general.
Any, Do you any of you suffer a...
Source: Cystic Fibrosis Adults Forum - October 16, 2015 Category: Respiratory Medicine Authors: Rlawyer Tags: Adults Source Type: forums
Instagram
Hi, I'm new here! I love connecting with CFrs on Instagram and was wondering if anyone would want to share their username and connect with me. Mine's Chelles_xoxo (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 16, 2015 Category: Respiratory Medicine Authors: chelles07 Tags: Adults Source Type: forums
New Orleans Adult CF Center
I just recently moved to Ocean Springs, Mississippi and the closest CF center in to me is the one in New Orleans. Can anyone tell me about this center? What's the doctor like? What in patient is like also? What are the nurses like in the hospital and in clinic? If anyone could let me know anything about that center that would be so nice. Also is there anyone on here who lives in or near Ocean Springs, Mississippi?
I'm new to this site so I hope I did this write. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 16, 2015 Category: Respiratory Medicine Authors: leothelioness34 Tags: Adults Source Type: forums
Mrsa
My son is 17...dd508...fev 110%...colonized with MRSA...first dx with it in 2012. He would do a round of lenezolid and not culture for 6 months or so and then BAM! out of nowhere. Unfortunately, we have been plagued with this...mess! He has not had a MRSA negative culture since the end of 2014. Now the drugs are not working as well as they previously did and he is flaring up more often. I am VERY interested in any alternative/holistic approaches to controlling this. Any ideas are appeciated. Thanks (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 15, 2015 Category: Respiratory Medicine Authors: MamaHollie Tags: Adults Source Type: forums
Nasonex on back order?
I went to the pharmacy to refill my daughter's Nasonex and it is on back order until December. Wondering what you all use besides Nasonex for nasal polyps? She does her Nasonex 2 squirts once a day. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 15, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Adults Source Type: forums
More next generation correctors coming
Another company, Galapagos, is moving forward with a second generation one. Slide 11 for Vertex shows 4x improvement over the combo (661/Kalydeco), while this in vitro shows a 6x improvement over Orcambi (which has equivalent cftr improvement to 661/kalydeco). So many things coming!
http://seekingalpha.com/news/2831876...mbi#email_link (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 15, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Good news
My doc gave me the green light to think about pregnancy! She says my FEV1 is great and there is no reason why I couldn't have kids. Don't know if that is indeed in my future but I feel so relieved/joyful/NORMAL!
Here's to joyous days, all!!!!
(L)(L)(L) (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - October 15, 2015 Category: Respiratory Medicine Authors: welshwitch Tags: Adults Source Type: forums
