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I know there are others out there who experience this....of late, I have been able to "smell" the bacteria in my lungs. I often wonder if anyone who is near me can smell what I smell and am sometimes a bit self conscious about it.. There really isn't anything I can do to hide it short of bathing...

My hospital is currently trialing this device on me while I am inpatient as part of a study and I have to say that I really think it is very effective moving secretions around. It feels similar to the Vest as far as the vibrations go but at a much higher frequency. Honestly, I would love to get...

Okay, so here's the issue. I have pretty gnarly pneumonia (bibasilar, left worse than right) and am getting really intensive RT in the hospital...probably the most aggressive schedule I have ever seen. I take Pulmocort BID, Pulmozyme BID (while in hosp), 3% HTS 4 times a day, Colsitin 150 mg BID...

I have been noticing a pattern whenever I am on my TOBI rotation. Last week, I started up my TOBI as I usually do but have noticed something. My chest aches after a day or so of starting it. My airways also feel more irritable, but that doesn't surprise me as I have a pretty good asthmatic...

It's been awhile since I posted any kind of update. The long and short is that I have been fighting an infection for awhile. The docs got me through Thanksgiving, I am very grateful for that..I spent a wonderful holiday with my extended family and friends. I finally had to say uncle and put me...

I have been diabetic for over a year and on insulin for almost as long. Just this last week however, I have actually been hypoglycemic WITHOUT insulin. <img src="i/expressions/face-icon-small-confused.gif" border="0">I have been getting readings of 60's to low 70's for the entire day. Needless...

I have found that over the last few weeks I have had alot of problems with digesting food. My usual dose of enzymes, Creon 20's, is usually around 3 with what I usually eat. Lately, I have had alot of pain and gas after eating even with that dose so I increased the amount of enzymes. That has...

I have found one thing that bothers me, especially since I have had to have so many IV's...my teeth. Prior to repeated and prolonged IV's, my teeth were decent..white and without cracks or pits or anything. Now, they have discoloration, funky lines that remind me of fungal growth and just seem...

I am in absolute shock..I found out tonight when I went in for my IV's that a dear friend has lost her battle with CF and its complications. Her sign in name here was Mare, she was a wonderful soul who helped me through some very tough times. She had emailed me over a week ago saying she was...

Yep, I am still in the slammer, officially now over two months. I am beginning to see an end to this particular ordeal though. The docs have identified why I am running my latest fever....I have C. difficile or C-diff for short. I have been on so many IV's for so long that the drugs have wiped...

Hi all! First of all, I want to thank Terri for calling me at the hospital. That was such a nice thing to do, we talked for quite some time. Even with a vent, I can chatter away!LOL! It has officially been over 2 months in the slammer for me....It was supposed to be for a total of 3...

Hello all of my friends, boy have I missed all of you! I went in for a "routine "tune up 5 weeks ago and am STILL THERE Gahhh! I have not had any internet access until now, I can be very creative when I want to be LOL! Apparently my first round of IV's weren't a success...I was supposed to go...

My labs for the last few times have come back as anemic, this time worse than the others which explains why I am tired as hell not to mention brewing another infection. All I want to do is sleep, my doc was away today, so the exact numbers weren't given to me, but the nurse says, yeah they were...

I have had chronic chest discomfort, right into my ribs and back. It is dull for the most part, not sharp at all, worse when I cough a lung out but it is always there even after I settle down. My doc attributes it to chronic coughing as well as myopathy issues (gotta have something to complicate...

Okay, just got my final report from my doc today...of course we have our friend B. cepacia but now we have a new one...Flavobacterium indologenes. My doc says it isn't too common (apparently it is a gram negative bug that likes to live in many places, food, water, soil, humidifiers etc...) I was...

Hello my friends...been awhile since I have been here. Been very ill since Thanksgiving and in hospital for about 3 weeks for severe flare up of my B. cepacia (other bugs had a party as well, but that one the docs worried most about). Needless to say, I have been thoroughly nuked by just about...

I have tons of Mucomyst, 10% solution...about 200 vials worth. I don't use them anymore as my meds have changed. I would hate to see them go to waste. I know others have posted meds they would like to donate on this board, so I hope that I am not out of line. If anyone is interested, please...

Hi my friends! Well, it is official...I have been diagnosed with CFRD. My doc suspected problems with my sugars a month ago when I described how I felt after meals and how I looked flushed even though I had no temps. Come to find out after getting a glucometer to montor my sugars, the times I...

Hi all...just wondering for those who have gone through this with drugs that they were allergic to, what it entails? I ask because my last culture grew out high colonies of B. cepacia despite aggressive IV therapy and found out that it was resistant to everything but bactrim and Cipro, both of...

I get so tired sometimes. I am not trying to be negative, but I truly am tired..maybe from sleep deprivation. I have been battling a really bad sinus infection for over a month, was on antibiotics (by mouth) for a few weeks but unfortunately the infection creeped into my lungs and now I am on...