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Here is a link that will provide you with data on each accredited center. You will need to register if you haven't already. But you can look up the information on the Centers in your area. Remember too, that if you decide you are not comfortable with your pulmonologist's individual approach...

You need to simply feel comfortable with your CF team. We do not mean to contradict your pulmonologist. But we can and do provide avenues for questions and exploration so you can have intelligent and helpful conversations with your team. Often the difference may be between pulmonologists who...

I had an identical reaction Aboveall......is this an accredited center?! My 10 year old has been on chest therapy and xopenex (albuteral at first but reacted poorly to it) since his genetic testing confirmed CF when he was about 2 weeks old. And of course we put enzymes on the nipple of his...

I have no doubt that makes you crazy. It's pretty impossible to determine the actual source. Do you know anyone with PA or MRSA? Stay away from hot tubs, rivers and streams, public pools if you can. Do you have regular contact with a gym or workout setting? It is just as likely if not more...

I will try to upload a picture.....

So sorry Justa! There are many recommended in various threads on this forum. But my provider gave us a Precision Medical Easy Air Compressor. It's designed for use 24 hours a day to run all kinds of equipment! Its a monster. I take an old Pari Vios on vacations if we aren't doing TOBI...

Yes yes. Call Pari. They are the manufacturer for the nebulizer and the cups with tubing. I would be concerned about the compressor frankly. Pari Vios is only designed to be used intermittently and not as chronically as CFERS need. After several failed Pari Vios nebulizers and extended...

The bottom of the uninflated jacket should just reach the top of the hip. What I usually do is use the larger size and adjust the velcro at the shoulders as far up as it can go and still hit the top of his hips. Then as he grows I just readjust the velcro to make it longer.....I hope that helps!

Momto2, I wonder if whether "light", "moderate", or "intense" is meant to be relative to your tolerance rather than some absolute or average value. I suspect that moderate exercise for you will help maintain your current lung function, and that it's more likely to decrease or decrease more...

That is supposed to be a thumbs up on your content Ethan! There's a glitch being worked on!

Interesting article on the benefits of exercise for CFers. It contains links to recent research comparing moderate exercise to the effects of albuteral. One of the things I found most interesting though was the researchers recommendations for moderate exercise compared to light exercise or...

I included a lot of info about Riley in this post for a new Riley Mom - see link below. It may help you. If you use the search box in the upper right corner, and enter "Riley" you will find more threads. You will also find a thread by me that complained of Rileys refusal to give me copies of...

My 10 year old is a "Riley Kid" as they're called. I will be happy to give you any information you like. I have no experience in Chicago so there's really no way to compare them for you. Do you have any specific concerns?

You are a beautiful inspiration! Congratulations!

Hi Pat. I hear you. And obviously with someone who had no physical challenges, that would be the first impression. And you may be right, but there are certain things we know about CF that severely affect male reproductive development. So assuming infidelity seems premature without other...

Here is a thread from last year with a lot of information that you might find helpful, Purple Teal. There are other threads you may find by using the search function with the word "libido". It does seem that low libido and difficult sexual performance is not uncommon in CF males..... I hope...

Purple teal, only you know how your husband is likely to react to questions from you to his CF Team. That is one reason I suggested generic questions. Such as - what are the likely side effects of ......? What effect does CF have on your hormones? He might be more offended by you asking his...

Do you go with him to his CF checkups? Will he let you? Is there a psychologist on your CF Teams staff? I'm envisioning you at the Clinic with him and asking the team generic questions. I wouldn't be surprised if it's related but there's as much a chance that it's not. Perhaps his...

Is this a weight issue for her? Or is she low on certain vitamins? Is your dietician concerned about increasing fat content or just weight. How old is your little one? I'm thinking a little more info on your circumstances and goals might help get some tips for you..... Blessings

Since the machine you already use is a Pari, and the travel machines many of us use is also Pari, have you considered just giving them a call? I've found their number on their website and talked to them before. They are pretty helpful. Happy Travels!