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I have mycobacterium abscessus. When I was first diagnosed with it, I was told that it's passed by water or soil. However, more recently my doctor told me about a situation -- I think in Seattle -- where a number of people in the clinic came down with it at the same time. They concluded that it...

I forgot to mention that I also take calcium 500 mg twice a day. That might also be something to consider or discuss with your doctor.

Low bone density is common in people with CF. My clinic does bone density scans annually. I don't remember my exact z-scores, but I think they're similar to your son's. I have been told I have osteopenia, but am getting close to osteoporosis. My doctor told me that although they have bone...

I am pancreatic sufficient and have had problems in recent years with bloating and discomfort. Abdominal x-rays confirmed that I was having blockage in my bowels. I went on Restoralax (PEG 3350) and mineral oil. This keeps things moving and my bowels from blocking. However, this year I started...

Personally, I always prefer home over the hospital. At home, I can rest better, I'm more comfortable and I eat better and more food. If you would still be on three drugs at home, that could be tricky to keep up with the schedule and could effect your ability to get a good night's sleep. I'm...

I've had this happen several times. It's really miserable and makes lung clearance difficult given the pain when coughing. I do the same things you are -- heat pad and ibuprofen. My massage therapist told me to lay sideways on a pillow -- in your case lay on your right side -- when doing the...

I started culturing mycobacterium abscessus in 2008. I think it affects people in different ways -- for some it causes a lot of problems while others function normally. It was giving me problems and caused a drop in my lung function, so I started aggressive treatment including IV meds in March...

Thanks for sharing -- I hadn't heard about this. I go to the Toronto clinic. They've been using the gowns for a few years now and are very strict about it -- both in clinic and hospital. They generally only wear gloves if they're taking my blood or checking my PICC line. It sounds like that may...

I get pain from violent coughing. Sometimes it is my upper back, sometimes it's other places in my torso. It's gotten so bad for me at times that I don't want to cough or do any lung clearance because of the pain. I agree a heat pad helps and use it daily when I'm having this type of pain. In...

I've been on home IV for a long time and I have to carry a small pump and IV medicine bag with me at all times. I also throw in extra batteries, IV connector, eye drops, sunglasses. I use this case from MEC (a Canadian company): http://www.mec.ca/product/5026-303/mec-globetrotter-shoulder-bag/...

Pseudomonas shows up in my sputum every 4 to 6 months and then disappears again. I don't consider it to be gone, but rather overshadowed by other bugs that show up in my sputum. The doctor has also mentioned to me that sputum results don't catch everything. When I provide a sputum sample, it's...

I do a nasal rinse every morning and find it very helpful. I use an ear syringe with salt water I mix up myself -- 1.5 cups distilled water, 0.5 t baking side, 1 t sea salt. (The water should be thrown out after a week.) It goes way up in my sinuses but keeps me pretty clean. My doctor that got...

I've been on both meds daily since 2008. I'm not aware of any interactions. I take a lot of oral antibiotics and I generally try to take them over a period of time to avoid upsetting my stomach.

I was diagnosed at 34. I had a series of lung infections that wouldn't clear up and eventually they tested me genetically for CF. Symptoms and individual experiences vary a lot based on your mutated genes, which infections you have in your lungs, as well as other personal factors. Most people...

I have been having low libido for almost a year. My CF doctor referred me to an endocrinologist. He tested my testosterone, which was at the lower end of normal. He tested several other things and ultimately decided my issue was way too much inhaled steroids -- Advair and Pulmicort. Your sex...

I have had a lot of issues this year with digestion and blockage. I'm not sure if I have actually had DIOS or my symptoms are just very much like it. When I'm clogged up and need to be cleared out, I drink 8 to 10 litres of PegLyte (also called GoLightly). Depending on how clogged I am, I...

I was diagnosed at 34. I had been treated for asthma my entire life. Leading up to my diagnosis, I started to get lung infections that the antibiotics were no longer treating. After trying many things, I was referred to a respirologist. They tested me for CF (genetically) and it came back...

I hated the smell and taste as well. The adult ADEK pills are also very large so not fun to swallow. My doctor said I could instead take one Flintstone's vitamin and a vitamin E. I'm not sure what the equivalent is for a child's dose.

I've been on IV meds for almost 2 1/2 years using PICC lines. For me, a PICC lasts about four months before it starts to clog. At that point, they are able to switch the PICC over a wire so I don't have to get a new insertion.Including set up and putting the dressing on, my experience is it...

I've had problems with hemoptysis before intermittently and have a couple episodes where I coughed up maybe half the amount of blood you had. I found that Pulmozyme always makes me cough up blood, so I don't take it. I do use 5% hypertonic saline although they reduced me to once a day because of...