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Hey there, I just commented on another one of your posts! Hopefully you'll get some help from the cf center. I would also recommend posting your question on the main "adults" forum as more people will see it there, and I know there are a number of people here with that mutation.

I'm sure this is all so overwhelming especially with a new baby but I'm so glad to hear that your husband is being tested. If he does end up having cf it is probably a more rare mutation and not one that is part of the newborn screenings so it wouldn't show your other kids as carriers. There are...

I don't have a severe reaction like your daughters but tegaderm does irritate my skin. I've used alternatives like Sorbaview and OpSite 3000 before. Unfortunately my current hospital doesn't have an alternative to tegaderm so I just tough it out. Another tegaderm alternative I saw mentioned on...

I've used those many times. They are the best! Ideal if you're hoping to keep working--they can be popped in your pocket or I would run the tubing down my sleeve and into my purse/bag if I had to be out and about running errands or something.

I'm sorry you're having such a hard time Cam. Have they done any other tests like a bronchoscopy or CT scan or anything to try and figure out why your lung function seems to be dropping so fast? It seems weird that they wouldn't do anything other than IV antibiotics when clearly those don't seem...

I'm jaimers_2 :o

I struggle with depression and have for years. Primarily CF related. I am not currently taking medication for it but I have in the past and they were helpful. For me it kind of waxes and wanes. I'll be doing quite well for a long time and then the depression kind of creeps back into the...

I don't live in your area so can't help you from a personal experience standpoint but I did a search for New Orleans and here are a few threads where people mentioned the clinic there. Seems the clinic is at Tulane and people are generally happy with their care. From skimming some of the threads...

I'm so sorry that happened! I can imagine that would have been so scary. Have they ever talked about trying to desensitize him to any of these medications? I'm not even sure they try to do that anymore but I remember vaguely when I was 7 or 8 being desensitized to an antibiotic in the PICU. It...

That is so exciting! Love getting to celebrate the "normal" (L)

Jeanne thank you so much for the way you have invested your life so deeply into this site and into US! I love this community and am so thankful for all of the information sharing that happens here.

That happens to me sometimes. I'll wake up with this tickle in my throat and can't stop coughing but it's not productive at all. Drinking something warm as Ethan suggested or doing some albuterol and then hypertonic saline are generally the two things that work for me.

Hope you were able to talk to your doctor and find out what the heck is going on! You have been through the wringer. Hopefully you'll get some answers soon. I know travel may be very difficult, perhaps not even a possibility, with agoraphobia, but maybe some place like the Mayo clinic or a...

We do "live free or die" here in NH!

I would look for a local weightlifting gym or program. You can seriously hurt yourself if you don't use proper form and finding a well trained/certified coach in your area would be best. If you're just looking to do resistance training type things you could look up a regular gym in your area--a...

it can be really hard to afford everything. Do you utilize any of the drug co-pay assistance programs out there? Those have helped me a lot, especially for things like pulmozyme and zenpep. Perhaps break your budget down into basic categories and search for local, national, or...

Congrats momma!

I'm in the same boat with ice packs as well! You could try posting them free on craigslist or if there is a local "shop and swap" or freebies Facebook page for your area you could post them there.

If you read the exercise forums you'll find there are a few of us that crossfit or do similar high intensity style workouts. I've found it to be very beneficial when scaled accordingly.

there is a Facebook group I'm in that saw an increase in fertility for some women after they started taking kalydeco--had been trying for a long time to get pregnant and had not been able to but all tests showed no issues and then found themselves pregnant within a few months of starting K. so I...