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I have 2. I wanted 4. My dr convinced me to stop at 2 on the basis that for every additional child, I would be exposed to exponentially that many more germs and illnesses. While I have "milder" CF having the kids has at times been tough on my health. I had never had IV abx prior to being a mom...

My 1st hospitalization was at age 31 -- due to an episode of Hemoptysis (coughing up blood.) Back then adults were still treated at Boston Children's Hospital. My roommate was a 4 year old with Diabetes who was learning to get insulin injections. It was definitely not a restful visit in any...

Thanks for the info. I found a pharmacy near me and got the Quad shot. Had never heard of it before your post.

Also...have two sons and began getting worried they have CF. Took them for a sweat test and my younger son didn't sweat enough. We waited 6 months and did it again. Neither son has CF, but both are carriers. I hope your next sweat attempt produces results.

I don't have any digestive issues and am almost constantly working to lose weight, and I do have CF. Thus, not having digestive issues or being a higher weight percentile shouldn't be the deciding factors.

I get seen at Children's Hospital in Boston, Massachusetts. I was diagnosed through a genetic test with only a cheek swab...later followed-up by further testing with a blood sample. I definitely agree with the recommendation that you have a genetic test done. I'd also switch doctors based on...

I'm an adult patient at Boston Children's. I get a copy every time. I love being able to compare my numbers -- the printout includes historical numbers going back several years and a graph showing the trends. I also have online access to all my lab work and cultures too. Definitely talk to...

You definitely can be diagnosed at an older age. I was officially diagnosed at 31...and a person diagnosed at my CF clinic recently was 73!

I'm 44 and have a sister with CF who is just shy of 40. While neither of us has full-blown CF (we're both pancreatic sufficient) her symptoms have always been worse than mine and her pft's usually have been about 10-15% lower. I asked my dr how this could be with us having the same mutations...

I thought I was having pancreatic issues (and so did the drs) with everything coming out liquid. Turns out it was a hernia and (surprisingly) dehydration. Hope it's as simple for your son.

My sister just experienced a big drop in her pft #'s. 2 weeks of IV antibiotics did nothing to move her numbers. The dr then started her on an asthma treatment plan and her numbers a month later are slightly better than her 'usual' baseline. Hope you find your answers.

I take it every day and have for approx. 9 years now. I remember better doing it every day.

If you have a smartphone, download the app "CF GeneE" which was created by Vertex Pharmaceuticals. It does not have all existing mutations listed (only the N1303K of yours is included in the app), but it is helpful with graphics and explanations. Hope it helps a little!

I'm on home IVs now and my dr. said that but for it being flu season, he'd admit me to the hospital. He and I agree that while I don't get a ton of rest in the hospital, I do not do as much and do not have anyone expecting anything from me.

Sorry to hear your troubles. I've been on Zithromax every day (250) and have not had any hemoptysis. You should talk with your doctor.

I do not know about TOBI pod, but my OB did research when it was recommended I take TOBI and said it could cause the possible baby hearing loss. That was back in 1998 and when TOBI was still new, so they may have more info now. You definitely should talk with your CF and OB doctors. Congrats &...

How did you get involved with the study? I had contacted them a couple of times, but never heard back.

It probably would be ok (ie not react with the antibiotics). With that said though, you should check with your dr because generally you should not get a vaccination if you're under the weather. Given that you're in need of heavy duty abx, that might be the case here.

DEFINITELY go to a CF Center! I was 'borderline' CF every time and was tested 5 times. It was only after my participation in a voluntary study that I received in the mail from the CF Foundation that they found a CF gene--and I was 25 at the time. Six years later after an episode of hemoptysis...

98% as of last week. I'm 42.