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I'm 30 and have been at the same CF clinic for the past 10 and was at another CF clinic for the previous 20. This past visit my doctors told me they needed to do my regular CT scan. Huh? Never had one of these before, but was told they have every CF patient having a CT scan every 3-5yrs...

First off- If you haven't had your doctors call in a script for the eRapid to the CF Services Pharmacy, I'd recommend doing so! It's amazing ($135 per handset without insurance). It's silent, portable, battery operated and med time is cut in half!! If you're on Cayston already, then you won't...

I've read a few posts where people say post transplant their lungs don't have CF. Even with new lungs, CF is genetic. Can someone help me understand what this means?

So I came down with a serious cough. I decided to wait on calling my doctor because I was just sick 2 months ago and my doctors first response is ALWAYS to say they will be hospitalizing me after two weeks if I'm not back to baseline on oral antibiotics. I've only been in the hospital for CF...

Our clinic (Boise) will be starting the third phase of DF508 trials which I hope, plan, pray to be a part of. Just wondering if anyone else has started and if they have noticed any improvements. If so, TELL TELL!!

About 2 weeks ago my doctor gave me a spirometry (PICO) meter to monitor my FEV1 at home. I requested it and they were more than pleased to give it to me with instructions to monitor my FEV1 daily and come in if/when I notice a consistent decline. Awesome! I assumed that my numbers would be...

So, I'm really curious if any of you have thoughts on this. I've been searching the forum lately looking at genotype and age compaired to FEV and we appear to be ALL OVER the place. I read about an older gentleman in his 50's who's FEV is 100 (or so) and his brother with CF died in the 70's...

I had my first hemoptysis when I was 7 mos pregnant. It was mild, I'd say just a few tbsp of blood. Since it had never happened (and I was pregnant) I was terrified and called 911 and was taken to the hospital. The bleeding stopped within minutes but I had 2 more bleeds that same week (all that...

I'm 26 weeks pregnant and my lung functions have dropped 40% so we're looking at a 14 day IV cycle. My doctor mentioned getting a picc and I'm terrified. I haven't been hospitalized since I was 2 (I'm 29) but back then they used IV's and it worked just fine. I'm assuming the worst that can...

I'm 26 weeks pregnant and my lung functions have dropped 40% so we're looking at a 14 day IV cycle. My doctor mentioned getting a picc and I'm terrified. I haven't been hospitalized since I was 2 (I'm 29) but back then they used IV's and it worked just fine. I'm assuming the worst that can...

I didn't really have issues with my first pregnancy, but this time around I'm so congested - I literally cough non-stop day and night. The cough is productive (it's not a sick cough) but it's like the mucus is never ending. I'm on tobi, pulmo., hypersal, albuterol (all twice daily). Has anyone...

I've recently had an epiphany about the guilt and shame I've felt... Every 3 months I go to a checkup and wait anxiously until I do my pft's and compare the results to my previous visit. I've realized those results determine the level of success or guilt and shame I feel. These feelings don't...

I read an article about a company called Cytori Therapeutics in the November 2010 issue of Wired- This company has found a way to extract stem cells from our fat (instead of from embryos) and with a little biology magic they are able to then inject those same cells into areas of your body where...

Our little girl is 16 mos old and we're going back to the fertility doctor to try for baby #2! We had to do IUI 4 times before getting pregnant the first time, hopefully we can repeat that with the same (or better) success this time. Wish us luck!! I've posted a link to our family blog below...

So my little girl is 6 months old! I can't believe it. But my FEV1% is not back to where it was pre-pregnancy. I've been in the 60's before and I'm now in the high 40's and my doctor is giving me until Nov 17th to get them back on my own or it's off to the hospital for me (which totally freaks...

After 15 hours of natural labor, little Luella Belle was born via c-section (her little head was positioned in my pelvis at an angle so she wasn't able to descend). She weighed 8lbs 6oz and was born at 37 weeks. Below is a link to some photos of our family, we are under the heading "Guess who...