Recent content by shay

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    FDA Approves Triple Combo - Trikafta

    Thanks so much for your illuminating post jricci. I am so painfully aware of the disparities of insurance plans in this country, so I did not mean to imply that there are not inequalities. I also understand that with the enormous number of rare mutations that the approval process for inclusion...
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    FDA Approves Triple Combo - Trikafta

    I really liked this article until I got to the end. The author wants to make the fact that these breakthrough modulators do not work for part of our community about race and socioeconomic status and race. That is so NOT the reality and could not be further from the truth! The reason that the...
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    Pic line vs. Port from mstein

    My daughter had her first port placed when she was a pre-teen. Her surgeon at our peds hospital placed it on her side. It is so nice since she can wear most anything and the port is not visible. She had her port replaced a few years ago and had it placed on her other side. The only disadvantage...
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    Adult clinic in LA

    Thanks for replying LL and we are in the process of researching the CF centers on our own but would really like to hear from our LA CF friends about personal experience with clinics and specific doctors there. My daughter will be living in Marina del Rey. Looks like these are our choices: 1...
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    Adult clinic in LA

    Hey gang, My daughter will be spending a semester out in LA this fall. Does anyone have advice for us about what clinic to contact while she is out there? We are from the east so have no clue. Thanks!!! Shay
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    how to get a new Altera handset

    Thanks jricci! Yep, our daughter used to use the Pari as well, but we are trying the eflow because of the VCD and other throat issues (to shorten the exposure to the med). And we used to use the Trio for the Colistin years ago for the reasons you stated, which is why she did ask her doc if it...
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    how to get a new Altera handset

    Thanks Hail2Pitt. We can absolutely get the doc to call in an RX for the handset. The problem is the out of pocket cost every month and the Colistin is so sticky that I am afraid of not replacing it regularly. Hi ToriMom, We used to use just a Pari neb for the Colistin, but we found it was...
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    how to get a new Altera handset

    Hi Autumn, That is incredibly generous! I am so touched. No, we will absolutely get our own, fortunately we can afford to if we have to. I was just looking for the best way to go about that. We used to have that stash on hand too from when she was on Cayston, but we have run through them...
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    how to get a new Altera handset

    Hey guys, Our daughter is in need of a new Altera handset but we are not using it for Cayston and so don't get a new one with Cayston delivery. She is using it for her Colisitin. My question is how is the best way to get a new handset?? They are quite expensive and it is not covered under our...
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    IV protocol

    Both our pediatric and adult centers do not follow that protocol. Both have been 14 days whether inpatient or outpatient, and then reevaluate to see if IVs should be continued any longer. For my daughter, the meds she has used at home have been the same as in the hospital. We just worked on...
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    Good news

    Congratulations!!!!!!! It's so nice to hear some great news!
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    For people taking Orkambi

    Hi Everybody, My daughter (19 years old) was a part of the Transport study and the following open label Progress study. She did very well on study drug (Ivacaftor/Lumacaftor combination) throughout both studies. She had very minimal (almost negligible) side effects. Her FEV1 is around 80%. We...
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    spacer brand

    Hi All, We have used the Pari Vortex for years. It DOES hold up to heat sterilization. I have never boiled one in a pot, but we use a baby bottle sterilizer and they hold up beautifully. We use the Vortex because it is the only spacer that I know of that will hold up to heat sterilization...
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    Just Married! (Pictures included)

    Congratulations Amber! You are beautiful :)
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    Some more great news in pipeline

    More eggs in the basket. Great news!