New profile posts

Hi! My name is Lizzie. Im 14 and my cystic fibrosis health is kinda going terrible. My lung OTC is 60%. I'm scared I haven't been this low in years. there is a possibility I'm going to the hospital if the steroids my lung doctor prescribed to me doesn't work when I'm finished with the medication. I just want someone to reach out to me if they have cystic fibrosis too because to be honest I feel a little alone here.

Alex was diagnosed at a year and a half with Cystic Fibrosis, every day since has been a constant struggle. Early on he had a pnumo thorax (collapsed lung)HE has been hospitalized several months of every year. Because of his illness he has missed out on so much in his life. Our family got involved in Cystic Fibrosis Foundation immediately after his diagnosis, we formed a walk in our town at Borderland

Please help Alex achieve his goal to become first Cystic Fibrosis PATIENT TO WIN ARM WRESTLING CHAMPIONSHIP IN LAS VEGAS IN DECEMBER 2022, Please help him and his family to get there

PLEASE HELP ANYTHING IS APPRECIATED

Welcome Asmith62

Hello Imogene. I don't know if you've heard the sad news that Jricci passed away on February 1st. As she was a great contributor here I thought you should know. I was a friend of hers.
Regards,
Vera

I am deeply sorry for the loss of your sister. I lost my sister to CF over 20 years ago and it is still painful. I also have CF and could use the Symdeko. I would be happy to pay you to ship it. Thank you!

Transplant Aug 2019.

Hi David, this is a test message to see if you received the private message. Thanks Jim

Hi Jeanne, this is a test for private messaging

Hi,

I would love to get that link to the webinar about kalydeco and pregnancy. My daughter is expecting now and we would appreciate any information that's available.

Thanks so much for your time and help!

Hey Rubyrose, I posted a very similar scenario to yours in a post asking about potential carrers for young CF adults. I worked as an RN in surgery for many years then went back to grad school and landed a clinical analyst job in our Analytics Division. Curious what type of work do you do within IT?

My daughter is 13 with CF. She is very lonely and isolated due to her illness. She would like to have a friend that also has CF. Her name is Annabelle and she can be reached on FaceTime at (606) 483-6707.

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 doing well.

Hi! We are new to this website. I have a 9 year old son named Aiden. Doctors told us a few years ago that they thought he had CF. He’s had 3 normal sweat tests and genetic testing revealed S1235R and 7T. I noticed you also have these mutations. I’m told these are non disease causing but since he “clinically” has cf they treat him as such. We see a pulmonologist but don’t go to a cf clinic. He is colonized with pseudomonas, has a gtube do to not gaining weight, and for the last 3 years has gotten “tune ups” regularly. They have also told us we needed to exercise cf precautions at school. I’ve never been able to contact anyone with the same mutations as him so I’m excited to visit with you. Hope things are well!

I was reading a post on DIOS from April and your comments on pancreatitis/mucus barrier. I find your posts informative, so I thought I’d ask your opinion. My daughter is in a constant state of some form of pancreatic pain. Docs don’t take it seriously, since her lipase is only slightly increased. Last week, after an ER visit, I read an article about slightly elevated lipase being used as a cf diagnostic tool with marginal or low sweat chloride results. I was wondering if you ever find this to be true. In chronic pancreatitis, are the enzyme levels ever crazy high? She never tests that high, but they do get elevated. She has one mutation, and the 5T/12TG variant, which ambry says are both pathogenic. Jewish says that she has cf related disease, don’t treat her for cf, but monitor her annually. How can we manage what she has going on? I see you have small duct disease, how small is your pancreatic duct? Hers is 0.5 mm. Any insight on this would be appreciated. We are in Longmont

Thanks so much for your reply. I'm just seeing this message now as I haven't logged in since Sept. I have my child's third sweat test tomorrow and am freaking out a bit. I would like to join the group, but would it show to all my friends? I feel like this is my son's info to share if/when ready. I would love to chat directly. If you ever have the time, please drop me an email at jenniferguon@gmail.com.

Hey, my name is Jake Sperry. I am a 41 yr old CFer living in Durango. Thought I would give you a shout out. If your ever in this part of CO, hit me up.

hi, you are doing a nice work. I am feeling happy with this community.

Hi, I am very interest about the inhaling ozone gas post of you. Are you still using it?