Search results

Simba15 - Sorry to just check this, I had been checking my private messages. The vest you are inquiring about has been given away. However, I have another one posted on 7/29. Someone contacted my local chapter and they asked if I could help out. Let me know if you are interested in the Hill-Rom...

ANOTHER VEST FOR DONATION: My local CFF chapter referred this person to me because the foundation can not be involved. This vest was used for about 6 months by a person that did not have CF. The family only requests that shipping be covered. Please private message me to make arrangements if you...

I don't much about your particular medical issues, my daughter has CF and her biggest problems have been GI. BUT, if I have learned nothing else, it is that not every doctor is right or wonderful just because they are a doctor. They are not Gods. You know your body, what you are feeling and what...

I sent you a PM, the vest and machine are available if you want them.

I know someone who has a barely used vest to donate. Her mother passed away about a month ago from a non-CF lung condition, it was her vest. It hasn't been used in over a year and her mother only used it for about 2 weeks so it is in excellent condition. She would like to donate the vest to...

I know someone who has a barely used vest to donate. Her mother passed away about a month ago from a non-CF lung condition, it was her vest. It hasn't been used in over a year and her mother only used it for about 2 weeks so it is in excellent condition. She would like to donate the vest to...

I know someone who has a barely used vest to donate. Her mother passed away about a month ago from a non-CF lung condition, it was her vest. It hasn't been used in over a year and her mother only used it for about 2 weeks so it is in excellent condition. She would like to donate the vest to...

We have never had trouble carrying my daughter's CF stuff but at some airports we've gotten a thorough check of our luggage and others just let us right through. You should definitely keep medication in their prescription containers to avoid hassles. Having lost luggage we've checked before...

Good luck to you! So far she is very happy with the whole team so let us know if you have any other questions.

My daughter just started there about 3 months ago. Her experience has been very positive, she has been particularly pleased with their responsiveness. She's 21 so she's in the adult clinic. Part of the reason she moved to their center was their transplant track record, she is not there, but just...

This is an excerpt from the website on cleaning. I have a 21 year old daughter with CF and I think this could work really well for her. I'm calling the company to set up a trial. From what I understand they will give you a 30 day trial and then assist with insurance or set up a payment plan...

This does remind me of the metaneb, which my daughter has used in the hospital and likes a lot! I'm just finding out about it, does anyone know if insurance is covering it? Or what it costs? I like the fact that it can be done simultaneously with aerosol therapy.

I forgot to mention, that's great that you are looking for answers and are there for him. It says a lot about you because many would just walk away when things get tough.

I know it can be hard, I'm the mother of a 21 year old and she can be the same. Perhaps you should suggest he seek counseling or maybe even get involved on this website where he can interact with people who know exactly what he's feeling. People that live the same reality he does everyday. It...

We live in NC and are planning to move to the Tampa area in about 5 years when my youngest graduates highschool. We love the area and have friends there and go down every so often. My oldest is 21 and she has CF. She is not a fan of the heat but when we are there she says she feels much better...

I just learned about this app from a weekly CF update I get through Bionews this past Monday and downloaded it. So you are getting exposure! Trying to get my daughter to start using it. I've just been going through it and learning about it and I'm very impressed so far! Thanks for doing it, It's...

How are your iron levels? My daughter just found out hers are very low and I'm hoping that helps with her fatigue.

My daughter has been going to UNC for 13 years now, peds and now adults and we have always gotten the PFT report. An actual copy of the graph of the PFT's as well as a print out of the numbers for that PFT and years past. We never even had to ask, it was automatic.

Vertex posted positive results this morning! I read it on thestreet.com but I think you can google it and find information on several sites now. Their stock is currently up and I think they are even more optimistic about the next drug, VX 661. As long as they have successes and make money they...

You are not the one with the problem. It is a fine balance between doing what's right for them and managing it all. It is very overwhelming at first, but slowly you learn to live with it. It's also hard when you are allowing one child to eat more snack/junk food and you have to tell the others...