Orkambi and M Abscessus
Was anybody out there on the trial who had m. abscessus? Did it help move it out? Ideas? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 14, 2015 Category: Respiratory Medicine Authors: ccsalema Tags: Adults Source Type: forums
what is the tips of teeth whitening
My teeth is not white but i want to white it. but i can't. If there are any tips, pls tell me. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - August 14, 2015 Category: Respiratory Medicine Authors: mandaji11 Tags: Families Source Type: forums
Weight
Hey
Over one year i have lost 10 kilos (22 lbs)
And about 30-40% of. Lung function.
Earlier this year i was diagnosed with cfrd and my cf doctors expected an incline in both lungfunction and weight gain because now im gonna be treated with insulin.
They basically thought the weight loss and lungfunction loss was caused by the cfrd.
That was back in may. When i started the insulin
Its now august, and i havent gained any weight or lungfunction.
In fact i lost a lil bit more weight and about 2-4% lungfunction.
So its definitly not getting better as expected.
Idk how, or why
Have any of you expierence with cfrd?
And g...
Source: Cystic Fibrosis Adults Forum - August 13, 2015 Category: Respiratory Medicine Authors: Rickengelage Tags: Adults Source Type: forums
other inhaled antibiotics?
Hi there,
Just wondering if there's anyone out there on any inhaled antibiotics other than Cayston, tobramycin/Tobi, or Colistin? I've seen some things online that there may be ceftazidime or amikacin available in the inhaled form? Just wondering if that's true and/or if anyone has ever been on it.
Thanks! (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 12, 2015 Category: Respiratory Medicine Authors: rubyroselee Tags: Adults Source Type: forums
Having trouble with CF services Grrrrrrrr
Is it just me with trying to fill my Meds with CF services It is such a daunting process with Hold on and then transfering then hold on 20 minutes yesterday 20 today grrrrrrrr. I wonder is it just me being placed on hold every time or is others having the same thing happen? I just feel like i need to spend so much time just to fill my Script each month I just have to vent my feeling in the past it went so much better but lately I just wish i had another choice. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 11, 2015 Category: Respiratory Medicine Authors: kgfrompa Tags: Adults Source Type: forums
Every Breath: CF Animation
Hey Guys LONG TIME NO SEE. Im youtube animator AngelXMikey. Several years back I said I was starting an animation about growing up with Cystic Fibrosis. I never stopped working on it, but I never got a lot done. But now Im ready to put alll my cards in and make it amazing. First I want to start by remaking the song so Im looking for singers, choreographers, and anything of the sort. I already have the choreographer from the original song, but this time I want more than one since a lot of you had input after I posted the song. Email me at mmstickfighter@yahoo.com with some samples of your stuff if you wanna join.
Animatio...
Source: Cystic Fibrosis Community Initiatives Forum - August 10, 2015 Category: Respiratory Medicine Authors: AngelXMikey Tags: Community Initiatives Source Type: forums
Calorie Needs for CFers
Hey everyone,
So a big topic when it comes to CF is eating and how to put on that weight. I have a CF youtube channel and have been emailed several times by people asking how I have been able to put on weight and what type of things do I eat. Just to sum things up I'm 25 years old, male, have luckily put on 30 lbs in the past year, and have 40% lung function. I just recently got together with my dietician and came up with 2 "CF Calorie Needs" equations to help CFers eat the right amount of calories each day. If you are interested, you can view the video here: https://youtu.be/QyTOGaHoiyM
Good Luck and Keep Fig...
Source: Cystic Fibrosis Adults Forum - August 8, 2015 Category: Respiratory Medicine Authors: TheSaltyOne Tags: Adults Source Type: forums
How do you maintain appetite ??
Now that I am off prednisone I don't have half the appetite. What do you do to maintain your appetite? (Source: Cystic Fibrosis Nutrition Forum)
Source: Cystic Fibrosis Nutrition Forum - August 8, 2015 Category: Nutrition Authors: Dank Tags: Nutrition Source Type: forums
ABPA and Xolair
Hi folks,
Does anyone have issues with Allergic bronchopulmonary aspergillosis (ABPA) ? Do you do anything for it, any luck with treatment?
I just got off Prednisone after being on it for the past 20 months. At the start of 2014 I had a CF-related decline in PFT that I was unable to really bounce back from after 3 weeks of IV antibiotics. They noticed my IGE level was over 6000 (normal is around 100 I believe), and had been for several months. They tried prednisone and voriconizole (one of the only anti-fungal medications, I've been told) but my IGE only dropped to around 1500-1000.
Next the docs sent me over to alle...
Source: Cystic Fibrosis Adults Forum - August 8, 2015 Category: Respiratory Medicine Authors: Dank Tags: Adults Source Type: forums
Treatment for the mildly diseased
I've got my clinic visit coming up next week and am conflicted about starting Orkambi. I don't love the price (even though I won't bear the brunt of the price, I don't love making my self-insured employer pay), I'm nervous about possible side effects especially those involving the liver, and am little disappointed that it doesn't seem to be as effective as Kalydeco. My lung disease has been somewhat mild. I only do Tobi 2-3 months of the year usually during flare up in the winter, I've yet to be hospitalized for a pulmonary exacerbation, I cough and produce but it is rare for it to be any sort of disruptive. I'm still at t...
Source: Cystic Fibrosis Adults Forum - August 7, 2015 Category: Respiratory Medicine Authors: ethan508 Tags: Adults Source Type: forums
School
With school starting for some in the next few weeks, might be a good idea to post some helpful hints. Here's a link that I found especially helpful. Our own Lisa Greene's site:
http://www.happyheartfamilies.com/SchoolIssues.html
Each year I get a packet of info together for the school as well as a letter to teachers regarding any concerns that may or may not come up. First and foremost that our child is a normal kid who just needs a few extra things to keep him happy and healthy. Our primary issues were making sure he got enzymes and dealing with more than one child wcf in the school. (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - August 6, 2015 Category: Respiratory Medicine Authors: Ratatosk Tags: Families Source Type: forums
CF sweetness...and then scariness!
As DS, who is 6, was finishing up his lunch I was working on sterilizing his nebs. He was watching and said "when I'm older I'll do a good job cleaning my nebulizers" and I said "I'm sure you will" and then we discussed the process. He then volunteered: "And I know what I'll do after I'm done?" I said what, to which he responded: "I'll go play with my children." I was nearly in tears over the sweetness until he added, "but I'll need a few things, some blue tape to tape them to the chair if they are naughty." YIKES! Well at least it was "blue tape" which is...
Source: Cystic Fibrosis Adults Forum - August 6, 2015 Category: Respiratory Medicine Authors: Aboveallislove Tags: Adults Source Type: forums
For people taking Orkambi
Since I started the drug on July 31 I've been having constant night sweats and high blood pressure. As well as fatigue. Has anyone else had similar symptoms? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 4, 2015 Category: Respiratory Medicine Authors: KellyAnneB Tags: Adults Source Type: forums
Canadian Health Care System
I may be opening up a can of worms, but I wanted to know if there were any Canadians out there and how you feel about your healthcare system? Are you happy? Do you feel your quality of CF care is good? Do you have easy access to hypertonic saline, pulmozyme, Tobi, all the CF drugs? Are you able to see your pulmonologist when you need to? With all the debates going on right now in the states, I want to know how Canadians truly feel about their healthcare system. If you are in the U.S., how do you feel about moving to a single-payer system? Thank you,
rosesixtyfive,
mother of Sam (ddf508) (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - August 2, 2015 Category: Respiratory Medicine Authors: rosesixtyfive Tags: Adults Source Type: forums
Help please
So I'm 16 gunna be 17 in 2 months, I'm 4'11 and I weigh 88 lbs.
I've began working out and everyone says I'm crazy because I'm already small. I get I need to gain weight which I will but I don't want to gain it from eating unhealthy all the time and getting like unhealthy weight. I'm trying to gain weight in muscle growth. I'm currently taking Mass Gainer Complex Protein twice a day, before and after I workout. Which is 700 calories in all. During the day I eat healthy, smoothies with a little protein in it. Just fruits , vegetables, my refrigerator is stocked with healthy foods. But I need help with supplements and the ki...
Source: Cystic Fibrosis Exercise and Fitness Forum - August 2, 2015 Category: Respiratory Medicine Authors: IsabelSlays Tags: Exercise & Fitness Source Type: forums
