Traveling Abroad
I've recently just applied to travel abroad to Thailand with my school but have never before traveled outside of the US. Does anyone have any suggestions on how to safely get all meds on the plane, through security, etc. Or any other good travel tips.
Thank!!! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 8, 2015 Category: Respiratory Medicine Authors: Jriet Tags: Adults Source Type: forums
In Need o Help Right Away
I have been on this site a few years ago and have decided to return because I am in great need of help, guidance and advice.
MY SITUATIONS:
I am a 29 year old female from California. I have cystic fibrosis, cystic fibrosis related type one diabetes, I had a double lung transplant 5 years ago and now have numerous transplant complications including 2 types of aggressive skin cancer, cataracts (now currently being treated), chronic pain, osteoarthritis and chronic pain. I have a college degree in anthropology, work as a freelance writer and in customer service and work as a volunteer for several different organizations.
...
Source: Cystic Fibrosis Adults Forum - September 8, 2015 Category: Respiratory Medicine Authors: anthro9310 Tags: Adults Source Type: forums
How do you know when you need IV antibiotics?
I have posted here before about my two sons getting diagnosed in their teens a few years ago. Because we did not go through the normal learning curve with CF, there is some basic knowledge that we do not have. This is one of these instances.
My older son, age 20 is having an exacerbation. He has never been hospitalized (for anything, let alone CF). He has been on cipro over 3 days with no positive effect yet. He is using his vest 3 hours a day, and is coughing too much to sleep at night. When we called the doctor, he said all we can do now is take him to the ER if we want to. My question is -- what is bad enough ...
Source: Cystic Fibrosis Adults Forum - September 6, 2015 Category: Respiratory Medicine Authors: fel Tags: Adults Source Type: forums
Highest FEV1 ever?
What's the highest % of predicted FEV you've ever had? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - September 5, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
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
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
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
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
Liquid, tablet or effervescent Zantac for kids?
We use liquid but for various reasons I'm looking to switch and wanted to know thoughts on tablet versus effervescent pills so for Zantac? Anybody's kids use? Are they as effective? Thoughts? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 28, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
Overanalyzing Buggers
So DS is 6 and until about 6 months ago, never had a bugger. What I'm trying to figure out is does this say anything about his CF sinus functioning...He hasn't seemed to have any sinus issues, but I want to make sure what to look for. He smells very easily; never complains of headaches; his nose runs when he throws a fit/cries or during treatment. The buggers are "normal" as far as I can tell (I say as far as I can tell as I think the carriers stuff hits me, as I have very and frequent thick mucus and GI issues, so who knows if my "normal" is really "normal" in that compartment.
So any t...
Source: Cystic Fibrosis Adults Forum - August 27, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
How to
Does anyone make their own saline solution for nebulizing? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 26, 2015 Category: Respiratory Medicine Authors: Jo-anne Tags: Adults Source Type: forums
Styrofoam Rx boxes
So I searched the old threads, but was wondering if anyone has found a place to "donate" or recycle the styrofoam boxes that pulmozyme is shipped in. I have given away to friends and family, but we get 3 of these suckers a month and my garage in being over run by them! I hate to just throw them in the trash. Any suggestions besides building an igloo with them? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 25, 2015 Category: Respiratory Medicine Authors: 2005CFmom Tags: Adults Source Type: forums
