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My ferritin has been very low for about a year. At first my doctor wasn’t that concerned about it(a year ago when I had my first low test result), but a year later after trying to improve my levels with diet, he is now concerned and prescribed over the counter iron supplements. I’ve been on them...

This question drives me crazy, I wish I had a helpful answer but I generally do my best to avoid the question. I work, but part time as I’ve found my health is more stable this way, and I always get co-workers or supervisors being puzzled as to why I don’t want a full-time position no matter...

Has anyone else had a rash after starting Orkambi? I know as side effects go this is a minor one, but it is really driving me crazy. It is popping up all over my body and is itchy and a little burning. I work with dogs and out near poison Oak a lot so I'm just trying to figure out if this is an...

Awesome news! Congratulations!

I find that doing nebulizer albuterol works better for me before doing HTS, but in general I feel like nebulizer albuterol opens me up better than the inhaler. I don't mix it, I neb albuterol, once its done I put HTS in the same nebulizer. Good luck!

Not sure if you have Medshare in your area but they take a bunch of unused medical supplies: http://www.medshare.org

Thanks Bookworm! I'm going to try doing 2 vials at a time! I had never heard that it's more effective that way. Also, I tolerate HTS very well, but my sister didn't. She bled every time she used it so stopped.

When I lay down at night on my back from time to time get what I would describe as gurgling or fizzing or popping noises in the back of my throat. It sounds like something popping or bubbling. I imagine this description will only make sense to people that it happens to. Do most people...

Yes once mixed it needs to be refrigerated and can be used up to 24 hours after mixing. Not mixed it doesn't have to be refrigerated. Just squirt the sterile water into the Colistin VERY slowly and that helps with bubbling. And roll it do not shake it.

When I am at clinic I request a copy of my results and the respiratory therapist gives them to me. BUT if I go see my doctor outside of clinic and see a non-clinic respiratory therapist and ask for a copy they tell me I'm not allowed to have a copy for confidentiality. Doesn't make sense since...

Which models of Honeywell do you guys use?

First - I agree with 4hats, get a prescription of Mephyton, it really helps. My doctor tells me when I cough up blood its either a blood clot or a sign of an increase in infection. Usually for me, it's the latter. Are you coughing up more sputum overall? Or is it just blood? Did they do any...

Hi Ian -- I might contact Michelle Compton out of California and get any tips or info from her, she might be willing to help as well. She did something similar. Here is a link to her book: http://www.blurb.com/b/3383846-breathing-room Here is her facebook page...

Welshwitch - I found out the person had CF through Facebook! We both were attending some CF event and had a CF coordinator friend in common. Small world! And then I did some internet stalking......:) Have you made a decision of what you are going to do? I really value face-to-face interaction...

Like many others I started working part time because there was a direct correlation between working full time and how often I had to go on IV's. For me a lot of it had to do with not getting enough sleep/rest and I might skip treatment because I wanted more sleep. I feel like I didn't have...

Since it is summertime, I would suggest having a family get together outdoors - a BBQ or something like that. You can bring your own serving utensils so you don't touch anything that is the same, and when you say hello don't shake hands or hug, just wave. If she seems like she has an infection...

Every doctor and hospital is different. I am a 31yo and have been on IV's several times and have never had a bronchoscopy. My doctor has never even brought up doing one(maybe I'll ask him why at my next appt). My sister didn't have bronch's until she had her transplant. BUT, I know other...

My cholesterol was 134(HDL 49, Triglyceride 68, LDL 71). Mine was actually high the last time I had it checked. I should probably increase my HDL and lower my LDL slightly since I have diabetes. (31yo)

I feel like there may be another thread on this topic - so you might want to do a search for it to get more info. My brother and I both have MRSA and we both have Df508. He's older and has a more mild case and only cultures MRSA. He has only been on IV's once for it and orals a few times and he...

I may be repeating what others have said but here is what I would do- bring a 220V hot water boiler(or call the hotel and see if they are provided in the room, often in Asian countries they have hat water boilers in the room) and boil bottled water if you can't find distiller water(distiller...