Activity Stream - CysticFibrosis.com

Sort By	Time	Show
Recent Recent Popular Popular	Anytime Anytime Last 24 Hours Last 24 Hours Last 7 Days Last 7 Days Last 30 Days Last 30 Days	All All Photos Photos Forum Forums

Older Activity
03-22-2019, 06:20 AM

scanboyd started a thread Sleep Apnea in Adults

I am 9 months post double lung transplant. Recently diagnosed with severe obstructive sleep apnea. Did not have prior to transplant. Any one else...

see more

0 replies | 211 view(s)
03-22-2019, 06:18 AM

scanboyd started a thread Sleep Apnea in Transplants

I am 9 months post double lung transplant. Recently diagnosed with severe obstructive sleep apnea. Did not have prior to transplant. Any one else...

see more

0 replies | 17 view(s)
03-20-2019, 07:43 PM

pabriksukucadang replied to a thread Don't Do This, DON'T DO THIS, please. in Adults

Very good message. I'm so helped by this info. Thanks pabriksukucadang

see more

7 replies | 7543 view(s)
03-20-2019, 07:02 AM

dmckulster started a thread Breathing resistance training. in Adults

Hi Guys, I was wondering if anyone here uses the breathing resistance devices? There are so many online and my physiotherapist recommended one but I...

see more

0 replies | 181 view(s)
03-20-2019, 06:56 AM

dmckulster replied to a thread any ideas on how long airway clearance systems last ? in Airway Clearance Techniques

Hi Guys, Have you ever tried using the PEP devices? What do you think of them? Do they work and what one should I get? Thanks

see more

5 replies | 1111 view(s)
03-19-2019, 02:24 PM

Imogene started a thread New Forum UPdate coming soon. in Adults

Know that Jim Caldwell is working with VBulletin to upgrade our forums...I know many have been waiting a long time...(Me especially!) I'll keep...

see more

0 replies | 226 view(s)
03-19-2019, 02:22 PM

Imogene started a thread Insurance question post transplant in Adults

This question came in via email: If anyone has information...post it here... "I had a really important question regarding insurance for...

see more

0 replies | 245 view(s)
03-18-2019, 06:01 PM

Printer replied to a thread Should I request a sweat test? in Newly Diagnosed

Newborn screening in most states is for ONLY 32 mutations. There are almost 2000 mutations (all on the same gene). You need an appointment at an...

see more

3 replies | 549 view(s)
03-15-2019, 07:55 PM

Ratatosk replied to a thread Help explaining? in DNA and Mutations

Newborn screening doesn't test for specific mutations but for elevated irt levels. If elevated, they retest and after that usually order a sweat...

see more

1 replies | 553 view(s)
03-15-2019, 05:16 PM

Melbell started a thread Help explaining? in DNA and Mutations

Hello! I’m still wrapping my head around all of the information regarding CF. Could someone explain to me the genes? I know that at birth they...

see more

1 replies | 553 view(s)
03-15-2019, 02:28 PM

Melbell replied to a thread Should I request a sweat test? in Newly Diagnosed

They only tested for two genes during the re-screen. They haven't tested for any more since then. I had no idea there were that many mutations, thank...

see more

3 replies | 549 view(s)
03-15-2019, 02:00 PM

scanboyd replied to a thread Adults with CF what are your jobs? in Adults

I worked in Nuclear Medicine for 35 yrs. Went to Duke.

see more

7 replies | 5322 view(s)
03-15-2019, 02:00 PM

Ratatosk replied to a thread Should I request a sweat test? in Newly Diagnosed

Did they actually test for genes after they rescreened, and if so, how many mutations did they test for? When DS was tested, I believe they only...

see more

3 replies | 549 view(s)
03-15-2019, 11:14 AM

Melbell started a thread Should I request a sweat test? in Newly Diagnosed

Hello! My name is Melanie and I have a one year old boy. Please forgive me if I am incorrect with any phrasing or info, I’m still learning about CF...

see more

3 replies | 549 view(s)
03-14-2019, 01:31 PM

JensWorld replied to a thread Unvaccinated child in school class - help in Families

I would be concerned, personally. I'm probably in the minority but as I see it children who are not vaccinated are way more likely to get hit with...

see more

6 replies | 2966 view(s)
03-13-2019, 03:03 PM

Runnergirl227 replied to a thread Possible New Diagnosis at 51 - Have Questions - Please Help in Adults

Diagnosis of cystic fibrosis is becoming more and more common at older ages. This is due to a number of reasons. First, the ability to detect the...

see more

1 replies | 1932 view(s)
03-13-2019, 12:56 PM

countrymud started a thread My Own 'Five Feet Apart'. Appropriately Zero Feet Apart in Families

If a story like this is going to be told, it might as well be told from a true experience. I personally am going to see the 'fan screening'...

see more

0 replies | 639 view(s)
03-13-2019, 11:58 AM

Imogene replied to a thread Five Feet Apart CF Movie!! in Families

Opening March 15th

see more

4 replies | 3716 view(s)
03-12-2019, 12:34 PM

kenna2 replied to a thread Phase 3 results for VX-445 triple combo in Adults

So I think they might keep these older ones around after the triple's come out. The reason is my doctor has told me that some patients can't handle...

see more

7 replies | 3007 view(s)
03-12-2019, 09:56 AM

stephen replied to a thread Phase 3 results for VX-445 triple combo in Adults

When Symdeko was approved, my CF center gave their patients who were on Kalydeco the choice of switching to Symdeko. Among the reasons was that it...

see more

7 replies | 3007 view(s)
03-12-2019, 09:08 AM

jricci replied to a thread Phase 3 results for VX-445 triple combo in Adults

When they have the 24 week data in, they'll choose which triple they’re going to submit for new drug application. Sounds like it will be sometime in...

see more

7 replies | 3007 view(s)
03-12-2019, 09:04 AM

jricci replied to a thread Phase 3 results for VX-445 triple combo in Adults

I might not have this right, but I’ve been given the impression that Vertex will attempt to get triple combo approved for anyone with at least one...

see more

7 replies | 3007 view(s)
03-10-2019, 06:38 PM

stephen replied to a thread Phase 3 results for VX-445 triple combo in Adults

Eric, I think it means they are applying for a New Drug Approval (NDA). Then it takes months for the approval to be granted.

see more

7 replies | 3007 view(s)
03-09-2019, 11:34 AM

erock77 replied to a thread Phase 3 results for VX-445 triple combo in Adults

Can someone clarify this key bullet: "-U.S. NDA and EU MAA planned for the third and fourth quarters of 2019, respectively-" Does that mean...

see more

7 replies | 3007 view(s)
03-08-2019, 10:30 AM

stephen replied to a thread Phase 3 results for VX-445 triple combo in Adults

I wonder if this will replace Kalydeco, Orkambi, and Symdeko, the way Symdeko has replaced Kalydeco in most/many cases.

see more

7 replies | 3007 view(s)
03-07-2019, 08:31 AM

Imogene started a thread Vertex CEO hints at new ideas for the UK in Adults

https://pharmaphorum.com/news/vertex-ceo-hints-at-new-ideas-to-bring-orkambi-to-uk-patients/?utm_source=pharmaphorum+Daily+Newsletter&utm_campaign=0bb...

see more

0 replies | 1557 view(s)
03-06-2019, 09:18 PM

jricci started a thread Phase 3 results for VX-445 triple combo in Adults

Very exciting results announced today for VX-445 :) Sounds like they'll review more data at end of 24 weeks and decide between VX-659 and VX-445 ...

see more

7 replies | 3007 view(s)
03-06-2019, 07:29 PM

LittleLab4CF replied to a thread Don't Do This, DON'T DO THIS, please. in Adults

Thank you for the input. Right now I'm trying to find a doctor who will find the best drug for my pump, the last one requiring a test of morphine in...

see more

7 replies | 7543 view(s)