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I was a bone head and had NO idea that I was almost out of enzymes. OF COURSE I have NO refills left so I have to wait til Monday to even get started on refilling this prescription. I DO have some expired Pancrease on hand....about 2 years expired. I KNOW that they are probably not nearly as...

We are in the market for a new car. One of my main concerns is air quality in the car. I am sure that is number one on everyone's list when buying a new car......can you sense my sarcasm. Anyway, a lot of the new cars have fancy air filtration systems. We are looking at the Hyundai which has the...

I had some very good luck this week. I have had a LOT of trouble trying to figure out what to cycle on my OFF AZLI weeks. I was getting very SOB using Tobi so I started Colistin this week and was having the SAME problem. It was so noticeable and so difficult for me. I could not keep up with my...

has anyone ever used this sinus irrigation system. My doc wants to get it for me; but, I called the company and there is really no way to properly sterilize it. That just seems way too risky to me. It is called sinus dynamics. <a target=_blank class=ftalternatingbarlinklarge...

OK.....so I am giving Colistin a try. I just took my second dose this morning. I noticed I was moderately SOB on my walk today compared to my usual. Not near as bad as what Tobi does to me.....but, it was a bit noticeable. It was raining and cold too though....so that could have played into it...

I need to have an oral maintenance abx for a few weeks until I get my next cycle of Aztreanam. I just finished up 3 weeks of IV's and inhaled Aztreanam. Now I need something to cover me for 4 weeks. My new doc has recommended Cipro 500 mg 2x/day by itself. Do any of you who culture PA use this...

We just had a phone call from a very good family friend and they have just had twins born into the family....one was dx'd with cf. My husband took the call....so I know very little about it. I have never really heard of twins with CF except the one book that is out. This family wants help and...

I really rely on prednisone as a therapy of last resort. It always seems to give me a bit of a kick for my FEV1. The kick tends to stick around for a while....maybe a few months. Anyway, I have a couple of new docs that are not fans of steroids at all. They like to treat the infection, do IV's...

This seems to be a hot topic now; but, I didn't want to intrude on anyone's thread. I am VERY frustrated with options for care in places that don't have a huge population. I drive 3 hours to a big center in a BIG city. My local option is a brand new center with a brand new doctor who has just...

I am just curious how long you guys usually do a "proactive tune-up". I have had some sinus issues and had a minor lung bleed a few weeks ago.....a few points loss on my FEV1; but, I just felt I needed a tune-up. I felt I was just having a hard time staying well. I have never done a tune-up...

I just ordered some more NAC today. For those of you who use it or those of you who are interested in using it, I was told the price is going up at the beginning of May so to stock up. I am not usually a sucker for a sales pitch...but, I don't know why this person would lie to me to sell me...

My ENT may have me get one of these to use for HS. Do any of you have anything like this. My only concern would be being able to sterilize the neb. Obviously can't get it if I can't sterilize it. Thoughts? <a target=_blank class=ftalternatingbarlinklarge...

I travel about 3 hours to go to my CF clinic. I really like them. They are pro-active and do a LOT of research. So for convenience at times I have a local center that is about 2 minutes from my house. That set up was working out fine until the director left about a week ago. I can see me really...

For those of you who do proactive type "tune-ups", how often do you do doctor's visits during your course of IV's. I am doing an optional tune-up and will probably see the doc once a week w/ PFT's. Just wondered.

Can you take NAC when you are on IV's? I just remembered reading somewhere that taking it can decrease effectiveness of antibiotics and the time you take it should be spaced apart from the antibiotics. How do you all take it when you are getting a tune-up?

This may seem like a dumb question and maybe I don't even want to know the answer. I've had a bad experience the last couple of days with a few failed PICC attempts. I have a line now and everything is going well. I have been told that the needle is smaller than what they use for IV's and that...

I HATE drinking water so here are a couple of my tips to make it a regular part of my day. If any of you have any to add, please do. I finally found those little packets of powder you can add....propel or crystal light. Makes it much better tasting with no extra calories or carbs. The crystal...

I had a bad day today with a PICC placement, ughh! First of all, is this all that unusual? They are thinking it is from dehydration. I FEEL dehydrated and I did have a bleed this week. I have only ever had 3 PICC lines. They say I have good veins and that they are getting a nice blood return but...

I am having a PICC placed today. Has anyone ever done IV Aztreanam and how is it? I am also going to continue with my course of inhaled Aztreanam and they are also doing Merrepenum. I know many of you haven't done inhaled Aztreanam; but, do any of you do an inhaled version of an antibiotic at...

I had a lovely day yesterday.....can you sense the sarcasm. It started with a trip to Urgent Care for an ear infection my daughter had. Later that night I had an episode of hemoptysis....hasn't happened in years, ughh and double ughh scarey. I did all the right things and made all the right...