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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...

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.

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...

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...

Katie low-if I had to pinpoint it I would say 26 or so. I'll PM you.

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...

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...

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...

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...

What are the benefits of oral versus IV antibiotics, for you? Or, what led you to do your first course of IV antibiotics?

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...

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...

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!

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...

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...

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...

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...

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...

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...

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...