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
Today, 05:14 AM

LateTraveller7 started a thread Anyone with 1585-1G>A or 3140-26A>G? Uncommon variant in DNA and Mutations

Any one with 1585-1G>A (legacy code 1717-1G>A) and/or 3140-26A>G ( heterozygous) ? I am over 50yr old. CFer.

see more

0 replies | 45 view(s)
Today, 05:08 AM

LateTraveller7 replied to a thread gene c.3140-26a in DNA and Mutations

I know this is an old post but I also have 3140-26A>G . I think you are the first person I met with this gene. I understand from the genome people...

see more

1 replies | 1389 view(s)
Yesterday, 09:48 AM

Ratatosk replied to a thread DIOS - any tips on how to get your bowels moving after a blockage? in Adults

DS was born with a bowel obstruction due to meconium ileus and underwent surgery when he was a day old. And he'd experience issues, which we...

see more

2 replies | 257 view(s)
Yesterday, 05:33 AM

Rebjane replied to a thread DIOS - any tips on how to get your bowels moving after a blockage? in Adults

How old is your daughter? My daughter has had terrible constipation as well. Our CF doc had to consult with a GI doc who was familiar with CF for...

see more

2 replies | 257 view(s)
11-14-2018, 11:27 PM

Babs03 started a thread CF Clinic and Doctor in Gainesville, FL in Adults

For those of you that go to Gainesville CF Clinic, who is your doctor and do you like them? My doctor in West Palm recommended Dr. Jorge Lascano....

see more

0 replies | 122 view(s)
11-14-2018, 10:24 AM

Frace started a thread DIOS - any tips on how to get your bowels moving after a blockage? in Adults

My daughter has awful CF-related gut problems. She's getting over a blockage, but even the laxatives aren't getting things moving - just sitting...

see more

2 replies | 257 view(s)
11-12-2018, 05:58 AM

Imogene started a thread vertex drug price uk in Adults

https://pharmaphorum.com/top-stories/vertex-told-to-reveal-cf-drug-price-as-mps-begin/?utm_source=pharmaphorum+Top+Stories&utm_campaign=a6a14f4bdb-EMA...

see more

0 replies | 322 view(s)
11-11-2018, 07:03 PM

jimcaldwell started a thread Hillrom Vest free in Airway Clearance Techniques

I have a Hillrom Vest Model 104 with 197 hours of use, if someone needs one. It has an Adult Small vest included.

see more

0 replies | 99 view(s)
11-11-2018, 04:18 PM

stephen started a thread A Look Into the Future in Adults

While advances like this are only dreams right now, hopefully they are not as far off as we may think. Let's Dream! "3D bioprinted lungs to be...

see more

0 replies | 235 view(s)
11-11-2018, 02:35 PM

JustaCFmom replied to a thread Two positive sweat tests in Newly Diagnosed

Hi Mom03, First, welcome! This site is full of helpful information and people. You are not alone! I have 3 kids with CF, now ages 14, 22 and...

see more

3 replies | 401 view(s)
11-11-2018, 05:04 AM

Mum03 replied to a thread Two positive sweat tests in Newly Diagnosed

Thank you. We live in Bahrain and there's only only one CF clinic here.

see more

3 replies | 401 view(s)
11-10-2018, 02:18 PM

Sophie’sFreckles posted a visitor message on Milliejrose's profile

Hey Millie! My name is Sophie (I’m 15) and I’m looking for someone to talk to who also has CF. Reach out if you want my contact info. Hope you’re...

see more
11-10-2018, 01:52 PM

Printer replied to a thread Medicare vs Medicare Advantage in Adults

Yes, I use Advantage. I have a plan (expensive) that pays all of my co-pays for Medicare A & B. I have been averaging 3 hospitalizations per year...

see more

4 replies | 704 view(s)
11-10-2018, 10:29 AM

Imogene replied to a thread Technology coming soon: Rent your data! in Adults

Leaving tomorrow! On a jet plane...carrying all your important surveys! More to come! Data turning to information you can RENT?!!!

see more

7 replies | 2950 view(s)
11-09-2018, 04:19 PM

kenna2 replied to a thread Two positive sweat tests in Newly Diagnosed

It is possible to have CF and not have any tell tale signs for years. I was diagnosed at 7 and some people on this site have been diagnosed as...

see more

3 replies | 401 view(s)
11-09-2018, 02:51 PM

Mum03 started a thread Two positive sweat tests in Newly Diagnosed

Hi! I've been reading your posts for a while but this is my first post. I think I'm looking for reassurance. Two of my three children (2 and 10) had...

see more

3 replies | 401 view(s)
11-08-2018, 04:30 PM

Printer replied to a thread Hello in Adults

You will adjust to CF and the new meds. I was dx at age 47, in January I will be 79.

see more

2 replies | 406 view(s)
11-08-2018, 11:28 AM

Gammaw replied to a thread Hello in Adults

Hi Ryarnell. Welcome. We’re glad you found us. You will find a wealth of information on our site and a large group of helpful people. Feel free to...

see more

2 replies | 406 view(s)
11-07-2018, 04:28 PM

Ryarnell316 started a thread Hello in Adults

My name is rhiannon i am 22 i was diagnosed with cystic fibrosis at 15 weeks when i was pregnant with my daughter. Its been a long journey. I go to a...

see more

2 replies | 406 view(s)
11-07-2018, 04:25 PM

Ryarnell316 started a thread Myself in Newly Diagnosed

My name is rhiannon i am newly diagnosed with cystic fibrosis and i am 22 years old. Its not easy i wake up every day sick so bad i cant always...

see more

0 replies | 166 view(s)
11-07-2018, 11:09 AM

gunelle replied to a thread Drop in Fev1 in Adults

Thank you for replies. My doctor just told me that I have a mycobacteria. They are still studying it and will know the final results in one month. I...

see more

3 replies | 422 view(s)
11-07-2018, 02:15 AM

LittleLab4CF replied to a poll Can an adult have cystic fibrosis without knowing it already? in Adults

This question is not only thoughtful, it's a good model for most medical tests and procedures. I try to remember to ask if anything actionable could...

see more

4 replies | 626 view(s)
11-06-2018, 07:37 PM

rubyroselee replied to a thread Drop in Fev1 in Adults

I typically run around 80%. One time I was 55%, but I really didn't feel bad. Turns out I was just exhausted from having two little kids. I found...

see more

3 replies | 422 view(s)
11-06-2018, 07:35 PM

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

Can't wait to see it!

see more

2 replies | 1068 view(s)
11-06-2018, 02:50 PM

Printer replied to a poll Can an adult have cystic fibrosis without knowing it already? in Adults

You are showing more than enough symptoms to justify further screening. You need to be seen at an APPROVED CYSTIC FIBROSIS CLINIC by a CYSTIC...

see more

4 replies | 626 view(s)
11-06-2018, 01:45 PM

TBOCB replied to a poll Can an adult have cystic fibrosis without knowing it already? in Adults

My son was diagnosed in 2009 at 2 months old based upon newborn screening. I didn't know much about CF, but as we learned I kept telling my mother...

see more

4 replies | 626 view(s)
11-06-2018, 12:31 PM

LunaFaith replied to a poll Can an adult have cystic fibrosis without knowing it already? in Adults

I am 34, I was diagnosed when I was 23, it wasn't until I was diagnosed that I connected things I'd noticed but either didn't know it wasn't normal...

see more

4 replies | 626 view(s)
11-06-2018, 11:23 AM

kenna2 replied to a thread Drop in Fev1 in Adults

I've had this happen many times. It's frustrating and completely normal. Sometimes I will feel amazing and my pfts will be low or I will feel like...

see more

3 replies | 422 view(s)