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Frankly it sounds like this hospitalization is more painful for you than for her. For her it's normal. For you, you're realizing that the person you care a ton about and see a future with has a very serious illness. Perhaps more serious than you initially realized. Seeing her in the hospital for...
I have heard the same thing from my docs about discontinuing treatment if I'm well (even if the culture is still positive). If there is no detectable decline or symptoms then they are going to try to keep their powder dry. The antibiotics used to treat M. Abscessus are heavy weight. If the...
Hi Michelle,
I received the same bad news 3 years ago in June 2014. I'm 28 years old. I was infected with M. Abscessus in April 2014 while on vacation in the Caribbean. At the end of May I was coughing up blood. I was hospitalized and they cultured M. Abscessus in early June 2014. My FEV1...
So sorry to hear about your situation. I'm 26. Only 1 year of college. I taught myself a programming language coming out of high school and dabbled in building/promoting websites. Got my first job based on that experience. I now work at an advertising agency doing search engine optimization with...
I've been working in an office environment for the past 7 years. Both jobs I've had I have disclosed to my boss and coworkers on a need to know basis and usually not immediately. I was hospitalized while working at both companies (still am working at the second, and just got out of my 4th...
Teach yourself Javascript and start coding web applications using the MEAN stack (Google it). You can teach yourself for free. It's in demand and will continue to be. To freelance (use a website like Elance) you don't need a certificate or degree, just do some projects for cheap and/or free to...
You should be dosing by grams of fat within the meal. For me I take one Creon 20 per 5 grams of fat in the meal. Remember the enzymes only work for 30-60mins after consumption. Dosage varies per person so you'll have talk to your nutritionist about how she originally calculated your dose. You...
I've done a bit of research on NAC. Links are below. I currently take 1800 mg of NAC 2x/day (http://www.amazon.com/Foods-Nac-Acetyl-Cysteine-600mg-Vcaps/dp/B0013OUQ3S/). Lower doses did not have much of an effect but up in the 2400+ mg/day range I saw improvements in FEV1 taken on a home...
Increase workout regimens to burn fat and gain muscle (as a guy with CF there's no reason to lose weight). If you're maxing out the number of workouts you can do between recovery periods then try upping cardio intensity and duration. Nothing is better for the lungs than some intense cardio. If...
I work at an advertising agency that caters to pharmaceutical companies doing search engine optimization. My CF has given me the chance to pitch and work on CREON and participate in a pitch for none other than Vertex's KALYDECO. Both have been absolutely amazing experiences!
8 PSI?? Nebs would take forever... I have the same nebulizer. I set it to 35-45 PSI. It has cut treatment times in half and I feel like it gets deeper in comparison to the portable Pari neb I used to use. My only caution is that nebbing Tobi will DESTROY the compression of this neb in a matter...
It's rare but fibrosing colonopathy happens if overdosing becomes routine. I have a nice big scar on my stomach from fibrosing colonopathy due to enzyme overdosing. They had to take out 4 inches of small intestine. The unused enzymes sit in there and eat away at your intestines narrowing the...
You dose enzymes by the grams of fat you are consuming in a meal. Calories from fat will not be digested - most nutrition facts charts will show calories specifically derived from fat. Calories are also derived from protein and carbohydrates - which enzymes help with - but enzymes are dosed...
This may seem counterintuitive but I've found the best way to get myself to eat (and gain weight) is increasing exercise. My appetite grows exponentially with just a little exercise and I begin eating many more calories than I am burning during exercise.
For me making eating and weight gain a...
I bought the EasyAir Compressor made by Precision Medical about a month ago - http://www.precisionmedical.com/homecare/air-compressors/pm15-easyair-compressor
So far I love it! Cuts treatment times in half for me (~60min to ~30min). For its size it's not too loud. Obviously not very portable...
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