Singing and lung disease
http://paidpost.nytimes.com/philips/...e&action=click (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 1, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Adults Source Type: forums
Vibralung..where can I find it? And for how much?
Hi all,
I was wondering if anybody knows where I can find the Vibralung device for airway clearance? I tried contacting the company more than once but had no answer. I found it through an online retailer but it is sold for $5000 which I feel is too much after going through some posts in this form that discussed its pricing.
I am visiting the US in about 2 weeks and would love to buy one for my daughter after reading great reviews about it.
Any help would be really appreciated.
TIA (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - December 1, 2015 Category: Respiratory Medicine Authors: MyBabyCeline Tags: Families Source Type: forums
Giving Tuesday!
We are getting ready to launch our new site...which the HOLs agree is wonderful!
At cysticfibrosis.com we have been CF Awareness for 20 years from the patients up!
Through our CFTechnology.org 501 C 3 we can give away technology and we are always about education! We have been approached from clinics all over the world...needing technology and supplies.
So if you are looking for a place to give today...
Donate
And WATCH for our new site...it will surprise you!
Thank you!
Salt and light,
Jeanne (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - December 1, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Adults Source Type: forums
Need ideas
Im on the great strides advisory committee for my local CFF chapter. I have a meeting tonight and am looking for ideas to pass along. Its been noted that most of great strides participants are families that have children with CF. Therere a lot of activities at the walk that are focused on kids, so this makes sense. Does anyone have any ideas on how to increase involvement of adults with CF? Of course, the infection control restrictions make this especially challenging. Ideas dont have to be focused on great strides event. Any ideas to actively engage and encourage adult involvement in fundraising are welcomed. (S...
Source: Cystic Fibrosis Adults Forum - December 1, 2015 Category: Respiratory Medicine Authors: jricci Tags: Adults Source Type: forums
Please help! Possibe CF? Sweat test needed after rectal prolapse in 2 1/2 year old
Hello,
This is my very first time posting here. I never thought I would find myself posing questions in regard to CF and my children, as I thought any fear of CF would have been completely put to rest by my prenatal testing and newborn screening. Apparently, as I am learning, this is not always the case.
I just got back a little while ago from an over night stay at a children's hospital following my daughter's first experience with rectal prolapse.
After speaking with the gastroenterologist at the end of her 24 hour observation period, I learned that it is protocol to send children her age with rectal prolapse for a s...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 1, 2015 Category: Respiratory Medicine Authors: Drai5 Tags: Newly Diagnosed Source Type: forums
hill rom vest
I have Hill rom vest model 105 I need to sell. I have 2 vests, size child large in blue and adult small in pink. It comes with travel/storage bag, manual and extra hoses. It has 735 hours of use on it and works great. Email if interested threeeades@aol.com. (Source: Cystic Fibrosis Airway Clearance Techniques Forum)
Source: Cystic Fibrosis Airway Clearance Techniques Forum - November 29, 2015 Category: Respiratory Medicine Authors: Melissa.eades Tags: Airway Clearance Techniques Source Type: forums
Cayston
I have a 23 day supply of Cayston. If anyone wants it, PM me.
Bill (Source: Cystic Fibrosis Families Forum)
Source: Cystic Fibrosis Families Forum - November 29, 2015 Category: Respiratory Medicine Authors: Printer Tags: Families Source Type: forums
job
hi,
i,m new to this. just a quick question, do any of you pwcf work in construction? im apprentice carpenter at the moment, but i have been told by my doctor i had to give up cos of dust. so i am wondering any of ye out there are carpenter or builder or construction worker?
thanks (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 28, 2015 Category: Respiratory Medicine Authors: Nicholas O'Halloran Tags: Adults Source Type: forums
Cayston
I have a 23 day supply of Cayston with a exp date of 3/17. If anyone wants it send me a PM.
Bill (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 27, 2015 Category: Respiratory Medicine Authors: Printer Tags: Adults Source Type: forums
nasal polyps and deviated septum
I just went to the ENT Dr. on Monday because I've been having obvious signs of polyps. I can't breathe from my nose at all. It sounds like I have a cold because the polyps are blocking my airway. I've had polyps removed at least 3 or 4 times in the past 6 years. Dr. has mentioned they will always grow back even after removed. Just a matter of WHEN. Mine grow back about every one and a half to two years but this time they came back within only a year. I had surgery around this time last year. Dr. said he has the ability to remove polyps in his office but he couldn't do it with me because my nose is too narrow. He said becau...
Source: Cystic Fibrosis Adults Forum - November 27, 2015 Category: Respiratory Medicine Authors: beautifulsoul Tags: Adults Source Type: forums
Considering 2nd adoption
We adopted a baby last year through the foster care system. Our sons biological parents are pregnant again. They asked us if we want to adopt the second one. I am 39 with cf. I work full time college professor and have my own fitness business. I am torn on the second child. I don't know how much harder is 2 vs 1 will be? We got our son at 6 months so he was sleeping 12 hours per night. Sleep is a big thing for me and getting sick. For those who have two can you share? I would be able to take maternity leave for six weeks and I am off from May to August. Sore torn??? (Source: Cystic Fibrosis Pregnancy Forum)
Source: Cystic Fibrosis Pregnancy Forum - November 25, 2015 Category: Respiratory Medicine Authors: phutton Tags: Pregnancy Source Type: forums
anxiety about hemoptysis
Hi all,
I've struggled with general anxiety off and on, so I know part of my fear is related to that. But I often have a lot of anxiety about having an episode of hemoptysis. I had my first hemoptysis while I was at work a few years ago and really freaked me out. I luckily got it under control and snuck out of work a little early without anyone really noticing anything was wrong. But I was quite shaken up by the experience, especially because I felt so alone at work by myself. Then over this past summer, I woke up in the morning to a bout of hemoptysis. I felt lucky to have been at home when it happened where my spouse wa...
Source: Cystic Fibrosis Adults Forum - November 25, 2015 Category: Respiratory Medicine Authors: rubyroselee Tags: Adults Source Type: forums
A New Home for CysticFibrosis.com!
We have been working hard behind the scenes creating our NEW WEBSITE!
Every few years, we bring everything to new software.
It is an amazing journey!
2016 is our 20th YEAR~
Here are some stats you may find surprising!
Registered Users: 17,584
Forums: 28
Topics: 150, 231
Replies: 820,309
We have only kept records since 2003....so these are searchable conversations.
Watch this space!
Salt and Light,
Jeanne (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - November 24, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Adults Source Type: forums
ABPA + Lung infection = pulse dose of steroids + IV antibiotics..
Has anyone been on a "pulse" dose of steroid to help with antibiotics/abpa? It seemed to do some good, but holy crap was that an awful experience. The dose in the hospital made me incredibly awake and wired. I slept for maybe 3 hours each of the three nights, and then I was released shortly after the third dose to resume my antibiotics at home. It was brutal just trying to get my brain to work to get medications together and get my way home.
I cultured my typical pseudomonas (and something new), with a huge drop in lung function and x-ray that showed a large portion in my large airway covered in a giant mucus pl...
Source: Cystic Fibrosis Adults Forum - November 23, 2015 Category: Respiratory Medicine Authors: Dank Tags: Adults Source Type: forums
Double Transplant for CF?
I just received my packet for my transplant testing and was reading through the material. I will be going to Cleveland Clinic. While my lung functions are still in the mid 40's I'm curious as to what I've been reading. I know I won't be listed as a critical person (my doctors wanted me to get on the list so I'm there in case I get really sick and they start to fall again). In the packet it said CF patients usually get a double transplant. I was just curious if this was the case for everyone or have any of you only gotten a single transplant. I would think it would vary per patient, but it sounds like at Cleveland Clinic th...
Source: Cystic Fibrosis Transplants Forum - November 22, 2015 Category: Respiratory Medicine Authors: kenna2 Tags: Transplants Source Type: forums
