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    Rifabutin and trikafta

    Hi all, I figured I would post here just in case anyone else has experience with this, but I am also working with my Cf specialist and infectious disease specialist (and national jewish) as well so I do have good input. I have long standing mycobacterium avium (MAC) infection. I have been...
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    Colistin for home infusion-do you mix it yourself?

    This is off topic and maybe should be a private message, but have you ever infused Polymyxin B (sp?) instead? My new hospital prefers it over Colistin (they said it’s less apt to cause kidney problems) and apparently they are very similar-but of course I can’t tolerate the Polymyxin...ha.
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    Colistin for home infusion-do you mix it yourself?

    Thanks Kenna, Having premixed IV balls will be much easier than mixing myself-I just didn’t know it was an option and this is the 5th time Ive infused Colistin at home. The CF clinic and CF pharmacist confirmed the 7 days and I spoke with the Physicians Assistant about it as well (I like to...
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    Colistin for home infusion-do you mix it yourself?

    Has anyone infused Colistin at home using premixed IV balls? If so, how long did they last in the fridge? I have infused Colistin at home before but I had to reconstitute the Colistin with sterile saline daily and inject it into Eclipse IV balls each day (or into an IV bag depending on my...
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    Treatment for the mildly diseased

    Katie low-if I had to pinpoint it I would say 26 or so. I'll PM you.
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    Treatment for the mildly diseased

    I understand your feelings and thoughts completely. I feel exactly the same way. I am wary of taking Orkambi because the results don't look terribly promising and I am already fairly healthy for someone in their 30s with homozygous 508 mutations -as you have said you are as well. My doctor...
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    MI clinics--Any experience

    I went to UM Ann Arbor for peds and adult until I moved out of state. I received phenomenal care there. U of M in general has very high standards and an excellent medical program. Just wanted to chime in-though I don't have current experience with the clinic. I don't know about the GR clinic...
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    IV antibiotics: Need advice

    Thank you all for the replies, they were extremely useful, even though I was not very clear or detailed with my questions. Good news though. I went and he did not even suggest IVs. My lung function was practically back to baseline without changing much except more airway clearance etc… He...
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    IV antibiotics: Need advice

    Hi all, thank you to those who gave feedback. Brief background: It has never been suggested that I do IV antibiotics before until a week ago-when my lung function had declined from my previous visit. Was unable to do them right away as I was leaving the country for a week. Now I have a...
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    IV antibiotics: Need advice

    What are the benefits of oral versus IV antibiotics, for you? Or, what led you to do your first course of IV antibiotics?
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    new clinic-I do not like-anyone else go to UW Seattle?

    Thank you for taking the time to respond so thoroughly-I really appreciate it. Your feedback and suggestions are helpful too. I have changed clinics before; 2 great clinics, 1 not so great clinic, and now UW-So I am familiar with the transition. It might just be their laid back approach I...
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    new clinic-I do not like-anyone else go to UW Seattle?

    I recently began going to the UW Seattle clinic and I really dislike it. I could go on and on but besides the lack of infection control protocol they also get my cultures wrong (wrote pseudomonas in my file until I ask the doctor point blank to double check and then they realize I'm right but...
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    anxious about not feeling good despite good numbers?

    I feel pretty similar to what you are describing. It seems like this has been ever since I was treated for MAC as well. My numbers are good and doctors dismiss what I say. I do have CFRD though, as well. No advice but good luck in your efforts!
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    CF. Marriage, and Finances... How do you make it?

    I am 30, female, with CF-mild to moderate. I work full time in a professional setting and pretty much support both myself and my fiancé. He works part time right now and is finishing school so that later on, when/if we need it-he can support both of us. I have health insurance through my work...
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    Career help....

    I wrote a long reply to you and then I accidentally clicked the wrong button :-( Shorter: My fiance is in nursing school. You can do an RN with an associates (ASN) or a bachelor's (BSN) granted you pass the licensure exam. If you do ASN you can do a typically one year ASN to BSN program if...
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    Therapies: What do you do each day?

    29 years old, with Df508del, U.S. morning: Symbicort, 2 puffs, lantus insulin: 14 units evening: pulmozyme and albuterol varies: Extra vitamin A, D, E, K, and multivitamin, exercise, Ultresa 5 with meals 3 with snacks and humolog insulin: 1 unit for 20 carbs. weird stuff: I eat at least a...
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    Gross, embarrassing things that come with CF!

    I dont post a lot, but I do read all the posts. This example is maybe not gross, but I still get embarrassed when I cough all the time on the bus or train surrounded by people (I live in a metropolitan area), or at a meeting, movie, or other function where everyone else is quietly paying...
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    new diagnosis... unrealistic clinging to hope?

    Try to not be discouraged preemptively, you never know what is going to happen in the future! Just to add my two cents I am homozygous for df508 mutation and almost 30yrs of age with more pancreatic insufficiency issues than anything else (and I spent my entire childhood avoiding doing any lung...
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    health insurance + job questions

    Depending on where you live you may be eligible for all sorts of government supported programs for health insurance. I myself received Medicaid for a couple years because I worked part time (you can make pretty decent money and still qualify for this) and did not have health benefits. The...
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    lung function

    Age 29, female, Double D508, mine is usually between 102-112%. These percentages vary depending on which measurement they use at your clinic, my clinic uses a lower threshold (meaning my percentages look higher there than they might at a different clinic), so my numbers are FVC: 3.75 liters...