Search results

Sadly, that has happened to me as well. My dentist believes that heavy antibiotic use is the major cause. I have been known to crack my teeth on a simple peanut butter and jelly sandwich! You need to see a dentist (I should talk, I put it off for as long as possible because I hate going to the...

Exercise is great for lung health, the stronger the muscles, the less effort it takes to oxygenate yourself. Just don't over do it and listen to your body.. If you are tired, pace yourself, don't try to do every exercise known to man in the same day. As with any exercise program, run it by your...

Praying for a peaceful journey for Micah as well as comfort for Tom and family. It's days like these that CF leaves a bitter taste in my mouth. Gentle hugs.... Jenn 40 wCF

Hi Lauren....yes, I did all of the work shown since March. It keeps my mind very busy and happy <img src="i/expressions/face-icon-small-smile.gif" border="0"> Most everything is done in oils, love working with them! Now I am totally hooked <img src="i/expressions/face-icon-small-wink.gif"...

They will send you a packet that you and your doctor needs to fill out, it isn't nearly as detailed as when you first apply, you need only go back a year and list all appointments with your doctors, hospitalizations, IV treatment (home care) etc. They also were late with mine, my first "3"year...

Geez, that would have scared the crap out of me! You did the right thing by going to the ER to have it looked at....I have never had this happen with either of my ports, the only exciting things that have ever happened were clotted lines and sepsis.. My current port is scheduled to be removed...

I am going through similar issues with my port now...I was admitted inpatient the same day as you! Anyhow, a problem that I am experiencing regarding my port is blistering from excessive sweating (from fevers) as well as the wing tip rubbing. I also have some swelling. The docs are resting my...

I really do hope everything falls into place for you.. If your insurance doesn't require a referral, then just make the appointment. My insurance was like that, I never needed any referrals, I could just call up any specialist and make an appointment. It just makes things a whole lot easier if...

Sounds like things are coming together for you~! Changing clinics is the best thing you ever did in my opinion. A good doctor will look at the whole picture, not just the surface of a problem. Time management has to be one of the hardest things to deal with when it comes to CF, some days, it...

I don't dread it too much, just get crazy bored once I start to feel better. The nurses can always tell whenever that happens, I have more interest in my computer, reading, crafts etc. For at least the first few days though, I am a slug as I feel so bad. I haven't been inpatient for nearly a...

Ambry takes blood samples from around the world from what I understand. I would ask your doctor for a full sequencing with deletions of all known CF mutations (1600+ mutations exist) If you aren't seeing a CF specialist, you should as they will direct you better and take care of the testing . I...

It looks like they only screened for the most common mutations (30) and not the entire panel of known mutations (which is 1600+).. They also looked at the polymorphism repeats, it looks like it is 7t. It is significant if it is a 5T (at least that is what I understand, someone correct me if I am...

Yeah, run to another doctor, quickly! Some GP's are wonderful, and unfortunately, there are some that have no idea what CF or bronchiectasis is. I was lucky to get a doctor who was very well versed in CF, in fact, she was key to getting me diagnosed. It's awful that she treated you like that...

If your O2 sat at yodur doc's was 89, then it probably dips lower than that at night. What I suggest is to get a night oximetry study done to monitor your 02 sats during the night. I would bet my pinky that you would qualify for at least night time O2.. Was that reading at rest or with exercise...

Sometimes coughing up nothing isn't good.....they sound like mucous plugs. I get them, especially in my left lung, I can feel exactly where they are as they create a dull, achy type of pain... You need to hydrate yourself very well, also, make sure you are doing your CPT, HTS...

They should pay for all of the stuff you mentioned....I am on Medicare as my primary insurance. They paid for every piece of equipment that I have needed so far without a hitch.. The O2, they will cover if you drop below 89 (or is it 88?)....If you are dropping into the 80's, then they should...

I would eat a sugar free/reduced dessert and the others can have the regular stuff. Better yet, since you don't do cake, eat whatever makes you happy! You are after all, the birthday gal! Have a great day <img src="i/expressions/face-icon-small-smile.gif" border="0"> Jenn 40 wCF

Great the your PFT's are up! Sucks that you have joint pain.....it definitely could be the antibiotics. I hope you feel better all around soon. Jenn 40 wCF

Glad it was covered......just goes to show that it doesn't hurt to be persistent!! Hope the Xopenex does the trick for you without the high heart rates. Jenn 40wCF

Diagnosed in 2005 at 33 yrs old after years of "asthmatic flare ups", pneumonias, digestive problems etc.. CF wasn't even on the radar and I was labelled a hypochondriac despite having very positive CXR's showing pneumonia and low O2 sats. Amazingly, my sputum was NEVER cultured during any of my...