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Has anyone ever had a capsule endoscopy done? I have one scheduled for Friday and just wanted to know your experience with it. Thanks.

My reflection for today... I’ll never forget the emotions I was feeling that morning. I had just gotten to work and was sitting in my cubicle. Everyone was going about their normal day at work, and I had this crazy moment happening to me. I was anxious, excited, and scared. I felt like I was...

Hi everyone, I've been dealing with some new, unwanted problems lately and I'm trying to figure them out :) But as some background...I've recently been unable to tolerate ANY inhaled medications (other than Pulmozyme). Over the years I have had some problems with inhaled medications causing...

Just wondering if anyone has used the Afflovest? Is there any significant differences between the effectiveness of that versus the Hill-Rom? My doctor won't prescribe it for me since he has read it doesn't work as well as the Hill-Rom, but I need something portable for business trips...

Hi all, I've struggled with general anxiety off and on, so I know part of my fear is related to that. But I often have a lot of anxiety about having an episode of hemoptysis. I had my first hemoptysis while I was at work a few years ago and really freaked me out. I luckily got it under control...

Hi, I was just curious, are there any of those IV balls (eclipse?) available for PA medicines? Specifically meropenem? Just wondering for next time I need IV's. I'd really like to be able to work during the day next time without much interruption, so I'm hoping there are options for the...

Hi everyone, I've been struggling with intermittent DIOS now for several years. Previously I was using a cap of Miralax daily as a preventative. However, ever since I was treated with IVs over the summer, my bowels have not been the same. Now I cannot tolerate Miralax at all - I get severe gas...

Hi there, Just wondering if there's anyone out there on any inhaled antibiotics other than Cayston, tobramycin/Tobi, or Colistin? I've seen some things online that there may be ceftazidime or amikacin available in the inhaled form? Just wondering if that's true and/or if anyone has ever been on...

Hi all, I completed my my first course of IVs on Weds (couple days ago). I had terrible side effects from them, such as dizziness, nausea, diarrhea, fatigue, and loss of appetite. Got some Reglan to counter that and it worked great. However, I've been off the meds for a couple days now and I'm...

Hi all, Woke up in the middle of the night last Thursday morning coughing up blood. Totally freaked me out. I would have to say that's one of the scariest things about having CF. So called the on-call doctor who said to wait a few hours and talk to my CF doctor since it was almost morning...

Hi, I know a 2-hr OGTT test is common for us CFers to have to go through. After convincing my doc that I think my sugars have been off, he ordered me one. However, I'm totally scared to take the test! Based on the values I've gotten at home on my glucose monitor and my symptoms, I know that...

Hi, I haven't been diagnosed with CFRD yet, but I'm pretty sure I've got something going on. Most mornings I deal with hypoglycemia 1-1/2 hrs after breakfast, so I try very hard to eat a low-sugar, high-protein meal first thing and then also eat a second breakfast in between that and lunch...

Hi, My sinuses have never been an issue until last fall. Ever since then I've been dealing with a lot of sinus pressure/headaches, dizziness, drainage, blurred vision, nausea, and fatigue. I have tried sinus rinses, which has not helped a lot. My ENT says next step is antibiotic washes...

Hi everyone, Ever since Labor Day I've been feeling cruddy off and on. Lots of sinus drainage, nausea, headaches, weakness, faint feeling, and blurry vision. CF doc thought it might be blood pressure or sinuses, so he sent me to an ENT. The ENT started me on sinus irritations. Finally this...

Hi, I finally got an Rx for a new neb compressor. Now I just don't know which one to get! Does anyone have any recommendations on a small, quiet compressor? I've been using a Pari device that keeps dying me every year, so I need something that's going to last. But I like the portability of...

Hi everyone, Anyone on the new Ultresa enzymes? Ever since Ultrase went off the market a couple years ago, my stomach hasn't been the same on Creon. I have had a couple severe bouts of distal intestinal obstruction syndrome (DIOS) and I just felt like the enzyme dose was never quite right...

I know some of you may already know about this, but just in case anyone is interested - here is a link for a CF exercise program specifically tailored to your exercise goals over a 3-month period. Deadline is Oct. 15th. Sounds like fun! http://www.cysticlife.org/CFit.php I know that exercise...

Hi, Ever since moving back to my hometown/state, allergies and sinus issues just showed up in my life and took over! I have tried Claritin and Zyrtec since the spring months, but nothing seems to really get rid of my post-nasal drip and throat irritation. It almost feels like a sinus...

I don't know if it's just me, but I seem to be very prone to bulging discs in my lower back. The first time it happened was a couple years ago - I coughed really hard while blow-drying my hair. When it happened, I couldn't move and was forced into a bent-over position for several minutes...

Hi everyone, Back in January, I got my diagnosis of DIOS when I ended up in the ER with severe abdominal pain, where they found a distal intestinal obstruction on CT scan. Ever since then, I have been taking about 3/4 cap of Miralax twice a day. If I go below that amount, I end up with the...