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Welcome Tamika!

Hi @Ratatosk! I am glad to hear you received your replacement Vest! Hill-Rom has had top notch customer service, in my experience, so I hope they were as good to you! :)

Congratulations, @BeautifulSoul! That is wonderful!! :)

Hi @Alex101! Welcome to the forums! Where up north are you from? I am originally from NH, but have lived in AZ for 4 years now. I have found AZ easier for my breathing; the lack of humidity is greatly appreciated! On an AZ note, be sure to drink more water than you think you have to and I...

Jeana, Your letter was beautifully worded! Accurate and getting the scary, matter-of-fact point across!

Hi! I do not have a FitBit, but I have a Garmin Vivofit and I LOVE it! Garmin has an app that can show you your steps, sleep, miles, and tracks your progress. Through the app (it's a free app), you can also 'challenge' people to see who can get more steps. The Vivofit also has a 'lazy...

Hi @Aboveallislove! It has been years since I've gotten a PICC removed (port now), but as others have said, I do not remember the removal of the PICC line hurting at all. I felt a really quick sensation (not painful), then they measure the PICC to make sure they removed all of the line, then...

Hi @Rebjane! Aerobika responded to our post on social media with their cleaning instructions as well! Here they are: https://www.trudellmed.com/products/aerobika

Hello! There have been many responses to this on our Facebook Page! Several Facebook members with Orkambi experience write: 1. "It's not for everyone. I was on it for 4 or 5 months and didn't feel any different. Made me feel short of breath. So I just stopped taking it. If it makes you feel...

Hi Autumn! One of our Facebook members writes: "I was told in 2011 that I needed a transplant. I was on 4L of 02, my sat. was usually around 86% and my FEV1 ranged from a low 28% to a high of 35%. My resting heart rate was often as high as 150 bpm. I was in the hospital constantly, doing 21 to...

Hi everyone! Thank you so much for your replies! Luckily, yes I am able to take ibuprofen. I'll get some heat packs too! Thanks again!

Hi everyone! Does anyone have any remedies for sore stomach muscles from coughing? Just wait it out? It feels like I have done several crunches, however, I've just been coughing. Thank you!

Hello! It sounds like you all are off to a great start by letting him be a kid and educating the school and his teachers :) In elementary-high school I had an IEP set up with the school which allowed me to eat and use the bathroom whenever needed as well as have my enzymes and inhaler on my...

Hi All! I started using my Aerobika a bit more this year, and I do it while doing my nebs and Vest. I like that it can connect directly to the neb, which is helpful. I try to do them at the same time -- figure it's gotta help! It will be interesting to see what my PFTs show after doing the...

Hello, @Imogene reached out to PARI in an effort to help sort out any confusion with the PARI e-flow machines. We’d like to thank PARI for their prompt attention to our question! I learned something while reading the materials that were sent by PARI. The e-flow nebulizer system is the...

Hi Autumn! I can tolerate the Tobi, so I do not have the same experiences as you have with that, but I have done both the Tobi Podhaler and the nebulized Tobi. I loved how fast and convenient the Podhaler was, but I had to watch a YouTube video to learn how to properly administer it first...

Hi @Rebjane! Have you ever used ScandiCal? It is one of the weight gain supplements that I really like. It is a tasteless powder; 1 tblsp is 35 calories. I tend to add it to my coffee, soups, salads, etc. You should be able to get a prescription for it if you would like to try it. I also...

Hi @Louisa! Welcome and congratulations on your baby girl! I have CF, so I do not know what it is like to raise a child with CF, but I do know what it is like to have it! I too had meconium ileus at birth and a bowel resection at 4 days. I was sent home with a G-tube to gain weight. I was...

Hello! I echo both of your thoughts! I think this community is especially important due to the precautions and infection control protocol with people with CF -- since I have cepacia I cannot attend any CF events -- which can lead to the feeling of isolation. Through the forums I have gained...

Hi @telebabe! When I travel I use the Mary Kay Roll Up travel bag -- it holds my Pari Trek S, eflow, neb kits, neb vials and my enzymes! I love it because it rolls up to fit in my backpack and it has velcro pockets, so if I just need one 'part' I can easily take it off. I also like that is...