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Thanks Welchwitch for the empathy. Every little bit helps. jricci, what a great well-thought out response. Yup, already on nebbie albuterol, used to help a lot, now, not so much. Currently on advair, one of the few things I do not hyper-react to. Tried Beclomethosone, didnt really work...

Anyone else here have severe large airway chronic asthma? Its really kicking my butt right now to the point where I can barely take any inhaled meds since I am so hyperreactive. Any suggestions? IgE is normal, neutophils quite high. FEV 58%, but O2 hanging out between 92-95, drops to 88/89...

Hi there. I understand your frustration because it really doesnt seem to make sense. If it were my daughter, I would get a second opinion, simply because I come from the theory, "if it aint broke, dont fix it!. I was born completely pancreatic insufficient. Over the years, I developed...

No, I do not take probiotics, but I do eat a lot of fatfree greek yogurt. If I eat high fat foods, I get nauseous, and may throw up the offending food. If I I dont puke up the fat, I'll have diarreah and severe stomach cramping. So, I dont eat fat except very small amts in lean turkey...

Every birthday is a major milestone. Something that regular folks (ones w/o a terminal disease) sometimes dont appreciate enough. CONGRATS!!!!! I had a huge blowout party when I turned 40. Friends I hadnt seen in a decade turned up.....they knew what a major accomplishment it was for me...

I can understand an adult taking a break from enzymes. I'm DDf508, completely PI since birth, major failure to thrive, severe stomach aches every day, constapation, the works. In my early 20's, my weight went up a bit. Out of curiosity, I stopped taking enzymes completely. I had an...

I have two daughters, ages 13 and 9. We decided to adopt when I was 30 since if I was going to become a mom, I wanted to do it in a way that would be the easiest on my body, therefore enhancing longevity. First, make sure your partner is on board 200%. Mommyhood is hard, and with CF, it's...

Anyone taking it here for severe chronic asthma? (on top of the CF of course!) Out of curiosity, were your neutrophils high? Did the meds work? Any side effects?

I'll be doing a port next time. For this last IV stint I went through 2 PICCS and 3 peripheral IV's in 12 days. A grand total of 41 sticks. The PICC folks wont work on me again, they say my veins are a lost cause. Nurses putting in the peripherals have the same story. So I dont have a...

When I hit my early 20's, I stopped having so much trouble keeping weight on! Now at 43, I havent taken any enzymes in two decades and constantly have to watch my diet and exercise every day to keep my weight from going up too high. All tests show my pancreas is kaput. My doc thinks I've...

Hi, my names Sara, I'm 43, am homozygous for f508, diagnosed at 3 months. I have two kids, both were adopted, and have been married 18 years to my HS sweetheart. :) Hanging in around 50% FEV right now.

If I dont shower relatively soon after sweating a lot, I break out in a rash from the high salt content on my skin. :)

I'm not in the corporate world, but in similar situations, I'd tell people I have asthma. Folks understand this- sounds bad, but not contagious. I'd reserve the real reason for friends.

Let me put in another plug for adoption. We have two daughters; our oldest was adopted internationally (took 14 months) and she came home at 11 months, and our youngest daughter was adopted domestically as a newborn (took 3 weeks for match after we finished the paperwork). Our international...

I was diagnosed at 3 months, back in 1971. My parents made sure I wasnt treated any differently (unless I needed medical treatment) and we traveled, went camping, did crazy stunts with horses. It was an incredibly full and varied childhood (of course mixed with lots of hospitalizations). But...

Well, my daughter doesnt have CF, but she did develop a rash similar to what you are describing because she was sensitive to dairy. We cut out the dairy and the scalding nasty rash went away. Hope you find a solution!

I have found that keeping our bedroom very cold (around 60 or below) makes a huge difference. We also have some wooden blocks under the head of the bed, so the whole bed is slanted. We also have wood floors and wipe down the room with a wet rag at least once a week. If I try to stay at a...

My favorite was using my IV pole as a skateboard. You had to get a good running start, but that thing would fly!

have you tried hopping in a hot shower for a while? Sometimes shocking my system with COLD but humidified air helps a lot. I havent had trouble with nausea from hydrocodone, but I take a pill. And I've also found Tussin CF helps a lot, or even popping a quick prednisone (although the effects...

We went a different route because I couldnt bear the thought of knowingly passing my suffering along to my children OR shortening my time with them by insisting on self pregnancy. We adopted. Although treatment for CF has come a long way, dont be fooled by the media hype. Folks die from CF...