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Done Steph! Thanks for posting. :) Autumn 32 w/cf

Very interesting stuff, thanks for posting! I am glad you have seen such an improvement! I was in the mannitol study here in the states. I saw a small improvement in FEV1 and maintained it throughout the study (save for one exacerbation). It was rather harsh and always set off a coughing...

Running, I have a lot of experience in this arena (unfortunately). I'll try not to ramble! I've had abnormal/precancerous cells twice. Both times had to have a procedure called a colposcopy for a closer look. These showed high-grade squamous(sp) cells that were the highest-grade before...

Hi Turtle, I had Anthem BCBS of California (PPO) through my husbands previous employer. Bare in mind that each plan is different, even with the same ins. company. However with that being said, our coverage through Anthem was great. Very low copays (the most I paid was $35 for Pulmozyme) and...

Thanks Martha! That is very good to know! I was just under the assumption that it almost always rose as we got older. I'm still waiting to see if I can have the sweat test done locally, but mostly leaning toward heading to Denver if they can't do one here. I agree on the baby thing. She is...

Love, Thanks so much for your message. It made me feel better that you affirmed it is a tough decision, that I'm not just being a baby. ;) I called my clinic on Thursday to see about getting a sweat test run there and how it would work (would ins. pay? would I have to pay out-of-pocket? could...

Cftr, Wow, it seems we do have a lot in common- 3 months when diagnosed, sweat chloride of 83, residual function mutation, age 32. VERY similar. I also have the need for few to no enzymes. However, I have had pancreatitis multiple times and St. Clair said they are seeing very low fecal...

Thanks Claire, still thinking on it! I'll let you know for sure. If my memory serves, you were maybe going to try to get into this study? Did you find anything out?

Hey everyone, it's me again. ;) I have finally been in contact with Connie St.Clair at Denver. The good news is, she feels as though I should come be screened for the study and has sent me the info and consent forms. The bad news is that I do not qualify on the "residual pancreatic...

It seems maybe I'm the minority here, but I've always had double-lumen PICCs. The one line is used for meds (including Tobra) and the other is used for lab draws, including peak and trough. We are sure to never infuse meds thru the "blood" line. That always worked well for me with no probs...

Hi Ana, I'm SO sorry to hear that you are now dealing with cancer! I don't have any experience in this arena but wanted to tell you that there is another member on here who has. Her name is Steph and her user name is PinkPigg. She is pre-transplant, but should still be of some...

Hi Mary, When I was pregnant I felt exactly as you are describing. I had cramps, back pain, sore boobs etc. I didn't even consider pregnancy as a possibility because I swore my period was going to start at any moment (and because we had been trying for so long I didn't think it was a...

Thanks for posting this! Funny enough, just today I bought a plant based protein powder (True Vitality) to try to add some calories. I had to search high and low for a supplement that didn't have any cow's milk protein in it! I haven't tasted it yet, but it's a little scary! ;) I myself...

Hi LeChampion, I went through something similar last January when we switched to a high deductible health plan. Our deductible is $3,300 and out of pocket max is $6,600. Just as with your plan, prescriptions count toward the deductible/out of pocket max. The plan (United Healthcare)...

I was just thinking the same thing as I took my shower this morning! I hope everyone stays safe and has a back up plan for treatments etc. in case of a power outage! I can't imagine going without power for as long as some of the news networks are predicting. Ugh. :( Take care everyone...

Hello again Ray! I use a NUK baby bottle sterilizer. I'm not sure the exact model. It was sent to me for free with my first shipment of Cayston from CF Services Pharmacy. If I remember right from another thread, you may be starting Cayston soon, so perhaps this would be a great way for you...

Hi and welcome Ray! I'm sorry you are so depressed! I have the same reaction to Tobi. Tightness, wheezing, SOB, the whole nine. At first it would take me a few days or a week of my Tobi cycle to start feeling it and I'd still muscle through the 28 days feeling like crap all the while. It...

Done Elly! Very cool way to way raise awareness. Thanks for posting this! Autumn

Martha, PM sent! :) THANK YOU! Autumn

Martha, I am SO happy for you that you have a supportive doc and are getting Kalydeco!!! Good for him/her for going to bat for you! YAY!!! I wish my doc felt the same way. In a nutshell he said since my health has been stable I am in a good position to wait for FDA approval for my...