Looking for more information.
If I test positive for one copy of the R117H-7T mutation and 7T. Does this mean I have Cystic Fibrosis? I was told I am a carrier of the gene. I will not get into see a doctor for another week to discuss results. I am concerned and hoping for more information, if possible.
Thank you! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 5, 2015 Category: Respiratory Medicine Authors: MattieG Tags: Adults Source Type: forums
Looking for a little more information.
If I test positive for one copy of the R117H-7T mutation and 7T. Does this mean I have Cystic Fibrosis? I was told I am a carrier of the gene. I will not get into see a doctor for another week to discuss results. I am concerned and hoping for more information, if possible.
Thank you! (Source: Cystic Fibrosis DNA and Mutations Forum)
Source: Cystic Fibrosis DNA and Mutations Forum - September 5, 2015 Category: Respiratory Medicine Authors: MattieG Tags: DNA and Mutations Source Type: forums
Good news
No news is good newsÂ…..just a general note to peeps on here how I'm doing. 35 years old (gonna be 36 in Nov, eek!) PFTs at 95 % and climbing, just signed up for a half marathon, working full time, living with a wonderful and accepting boyfriend, life is good. Feeling grateful.
That is all <3 (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 5, 2015 Category: Respiratory Medicine Authors: welshwitch Tags: Adults Source Type: forums
Secondary Insurance Reputations
Hi guys, I'm looking to move to another state and will need to get a new secondary insurance. I currently have secondary insurance, so I can't be denied, and I have browsed the "complaint index" for various companies that I can choose from. I also have prescription coverage so I'm mainly just looking at hospital and outpatient service coverage (part A and part B). I've already talked to many resources about how to go about getting my insurance and have seen the ones I can choose from. I was just wondering from a CF perspective have you guys had better luck with certain companies over others?
Thanks in advance! ...
Source: Cystic Fibrosis Adults Forum - September 4, 2015 Category: Respiratory Medicine Authors: TheSaltyOne Tags: Adults Source Type: forums
Cystic Fibrosis Tag
Hey everyone, have you guys seen the Cystic Fibrosis Tag videos CFers are doing? It's kinda like a "CF Challenge". From what I understand the CF foundation urged CFers to share their stories and what it's like having CF to help raise awareness and The Frey Life on youtube started the trend of CFers making these videos. It's a really great idea for spreading CF awareness and helps people understand a little bit more about what it's like living with the disease.
If you guys haven't already made one, try to do one and post it!
Here are just a few so far and more keep popping up everyday:
Larry Brian - https://yo...
Source: Cystic Fibrosis Adults Forum - September 2, 2015 Category: Respiratory Medicine Authors: TheSaltyOne Tags: Adults Source Type: forums
Nanny with Special Needs Experience Available
in NYC and surrounding suburbs.
I have many years of experience caring for children with unique medical needs, including g-tube/j-tube feedings and respiratory therapy. I truly enjoy watching these children grow.
I work closely with the child's medical team and therapists to encourage growth and development. My experience includes working with medical professionals and therapists, including: respiratory therapists, feeding therapists, speech therapists, physical therapists, and developmental specialists. When needed, I have successfully advocated for additional Early Intervention services that will benefit the child's gr...
Source: Cystic Fibrosis Parenting Forum - September 2, 2015 Category: Respiratory Medicine Authors: TNYC Tags: Parenting with Foster Cline, MD and Lisa Greene Source Type: forums
Seeking vest model 105
This is perhaps a long shot but I figured I would try. I'm a 32 year old CFer and my current vest(older model..received many years ago) is not quite working anymore and I am much need of a newer one. My insurance has already denied me which puts me in a very bad position. I've tried fighting with them for months but the best they can offer me is one for $16,000. I am on disability and have no excess cash, so I was hoping to find someone who perhaps had a 105 model that was not being used that they could donate to me at no or very little cost. If so..please email me at Ikarimalice@gmail.com Thank you very much. (Source: Cy...
Source: Cystic Fibrosis Airway Clearance Techniques Forum - September 2, 2015 Category: Respiratory Medicine Authors: DanielN Tags: Airway Clearance Techniques Source Type: forums
Anyone knows?
Hello
So im declining fast, my lungs function dropped from 90% to 45% fev 1 within a few months
No antibiotics are working/recovering anything.
Also weight is going down fast.
I never had any issues witj cf before, not much atleast
Its really weird.
Its since a year or so.
Im thinking ive got ABPA
My currents symptons are:
- Coughing up dark green mucus with hard pieces in it.
- I feel like i constantly have to clear my throat, its harder to talk clearly.
- rapid weight and lungfunction loss, not responding to antibiotics used against my known lunginfection.
( i do eat like crazy and get more than enough calorie...
Source: Cystic Fibrosis Adults Forum - September 1, 2015 Category: Respiratory Medicine Authors: Rickengelage Tags: Adults Source Type: forums
Vests for sale for Hillrom
I have several vests for sale. I have a basic black one in a child's medium, a basic black one in a child's large, the new style blue one in a child's large, and a new style one in camo adult small. Not looking to get much for any of them just to help purchase medications. Let me know if your interested in any of them. Thanks (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - September 1, 2015 Category: Respiratory Medicine Authors: emilyspeanut Tags: Airway Clearance Techniques Source Type: forums
Just discovered an easy high fat product
DS is extremely picky but I've discovered I can expand his food acceptance with familiar foods that have something new...so I tried these which have pizza and cheese and bacon but also egg. It's super easy to cook and very delicious and now he's asking for scrambled eggs whereas before he would have nothing to do with them....I'm going to wait a few more times before moving on to the eggs, but am happy to have this as an easy meal when it's a hectic day. He also does better with crunchy solids and so it's also a good option for those in the toddler want to feed myself stage.
https://www.redbaron.com/products/si...es/defa...
Source: Cystic Fibrosis Nutrition Forum - August 31, 2015 Category: Nutrition Authors: Aboveallislove Tags: Nutrition Source Type: forums
Cystic Fibrosis in a Physical Form
Hey guys! Ive made a concept of CF's physical form for my animation. What ya think?
CFphy.jpg
Attached Images
CFphy.jpg
(11.2 KB) (Source: Cystic Fibrosis Community Initiatives Forum)
Source: Cystic Fibrosis Community Initiatives Forum - August 31, 2015 Category: Respiratory Medicine Authors: AngelXMikey Tags: Community Initiatives Source Type: forums
My baby is here!
jane newborn.jpg
Jane Caterina
August 24, 2015
6 lb 7 oz
Delivery went smoothly and I'm recovering nicely. We're home now and doing well. Now I'm just trying to eat like crazy so I can keep my weight up so I can continue to breastfeed.
Attached Images
jane newborn.jpg
(92.7 KB) (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - August 30, 2015 Category: Respiratory Medicine Authors: Meg73 Tags: Pregnancy Source Type: forums
For California Residents - GHPP and Medicare Questions
Hi everyone,
My husband Gary and I are new to this forum, so thanks for having it! Does anyone have good answers about Medicare and GHPP? We're confused and need to make a decision very soon about whether or not to take parts B and D.
After working all of his life, Gary finally went on disability last year. He has taken GHPP (Genetically Handicapped Persons Program) for years, which covers most everything--no copays or Rx costs--for an annual fee. Gary just received a Medicare notification. He automatically gets part A for hospitalization, as an individual on permanent disability. However, he needs to decide whether to ac...
Source: Cystic Fibrosis Adults Forum - August 29, 2015 Category: Respiratory Medicine Authors: Caszyrose Tags: Adults Source Type: forums
Orkambi and fat
I know there's been a lot of questions about Orkambi and how much fat you should eat with it. Vertex researchers have kindly shared feedback with me that "the data we have with ivacaftor and a controlled diet is with 20g of fat and greater; however, the guidance in the Phase 3 protocols was that LUM/IVA should be taken within 30 minutes of consuming fat-containing food such as a standard CF high-fat meal or snack. A snack may certainly contain less than 20g of fat. In addition, the example of foods in the Orkambi label contain 5-15 grams of fat, so 5 g should be adequate." The researcher also added that &quo...
Source: Cystic Fibrosis Adults Forum - August 29, 2015 Category: Respiratory Medicine Authors: imported_Momto2 Tags: Adults Source Type: forums
Delta F508 + D797A
We have a recently diagnosed newborn with this rare combination. We have been fortunate enough to speak with several physicians both at Stanford and UCSF, we find ourself facing the great unknown.
Our daughter is 6 weeks old, had a positive newborn screening which resulted in the genetic sequencing. Her sweat test came back at 40, clear chest X-ray. normal labs and completely asymptomatic to this point. She is growing normally and had we not had the call from the doctors office, we wouldn't think anything was wrong.
I work in a unrelated field of medicine so I was able to get good access to the information available an...
Source: Cystic Fibrosis DNA and Mutations Forum - August 29, 2015 Category: Respiratory Medicine Authors: sfzobie Tags: DNA and Mutations Source Type: forums
