Search results

I am diagnosed with CF with a stop codon 7T M470V and the other gene 5T M470V. I have a healthy child with one M470V7T and a child treated like CF but not diagnosed with my stop codon 7T and 2 M470V variants. She has had sinus surgery recurring pneumonias failure to thrive and is Pancreatic...

Advice on disinfecting while traveling in Europe? Instead of distiller water can a person boil water for a certain length of time?

I agree with eradicate the PA and I also share the concern your child is not being treated the same as she would with a CF diagnosis. I was diagnosed with CF as an adult and although I always had CF symptoms my lung issues became much more significant after I cultured PA. My 15 year old is...

Maybe you moved a mucus plug out and it scrapped your lungs up on the way out.

https://www.fphcare.com/products/airvo/. I read this is in clinical trial for CF now. The Airvo can be used with or without oxygen and keeps the airways hydrated.

I have tried all of the nose sprays and nothing works because they all drip back out. I am trying a steroid in the sinus rinse bottle in hope it actually makes it into my sinus cavity. Best wishes.

I have similar but not the exact CF genes and my sinuses my biggest problem. My CF pulminogist feeIs it is important to keep sinuses cleaned out to avoid bacteria starting in the upper airway and ending in the lungs. Also my sinuses get so swollen that my nose does not drain. I am trying...

I got yelled at by my CF for sending a non urgent email verses calling about coughing up blood. My wonderful CF nurse put it well. Yes coughing up blood is a CF thing but CF things need treated. Do not hesitate to call and just he honest and say you are worried and not sure when to call but...

I would call the CF center you went to and ask what percent of CF patients are seen by the doctor you saw. We're you seen at a children's hospital? My experience children's hospitals diagnose the fewest patients. There are two sides to this story and I have experienced both. I was diagnosed...

Bill, you are incorrect. I have heard this countless times while trying to figure out my daughters complex medical issues. Also Not all CF specialists at CF centers are educated on CF. Some hospitals list all pulminologists as on the CF team when actually only 2 of the doctors attend the CF...

If you are concerned about the baby tolerating Tobi neb, maybe ask to do the first treatment at the CF clinic.

I was diagnosed at 35 and at 38 I feel better with proper treatment. I hope you find answers and better treatment. Do you do any mucus clearance?

I would make sure thenpulminologistnisnlistednon the www.cff.org list. If the doctor is at a Cystic Fibrosis Foundation Accredited hospital still ask what percent of the doctor's patients have CF. i would ask for your newborn screening data if it was done in a state that screens for CF...

How was your appointment? We are here if you need to vent.

I was diagnosed at 35 by genetics confirmed with sweat test and now I am 38. I was diagnosed due to my children's testing and they both have different CFTR mutations and the same dad. I feel so much better with treatment. Best wishes.

Thank you your offer is very kind, but I already have a Avent sterilizer and I am wondering if the new ones that also dry are a good idea.

Thank God you are being followed at St. Chris. It was a pulminologist at CHOP that let my 15 year old get to a low of FEV1 50%. He was listed on the CHOP website as part of the Cf team at the time, but since that time I believe they no longer list all their pulmonologist's as on the CF team...

thank you this is on my Xmas list

I have CF but was not diagnosed until age 35. I have one stop codon severe mutation and a mild mutation. I have always had symptoms I did not know were CF. I have chronic sinus infections since I was 2 years old. I have pneumonia at least yearly since my teen years. My experience was that I...

I was diagnosed at 35 and at 38 I feel so much better with proper treatment. I find the hard part is my parents are still in denial. I hope this results in treatment that works for you.