Search results

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    Mycobacterium Abscessus

    Hey- I was diagnosed with m. abcessus in January 2015, didn't start treatment until November 2015 (after a few months of just feeling crappy) and was on treatment until early June 2016. I won't lie- the treatment SUCKS. One of the IVs they gave me made me vomit 10-12 times a day until we had to...
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    Primary Care Dr

    Technically, no. My PCP is at a family health center. I can go to her for non-CF things. I've been to her to get antidepressants (which now I go to my CF doctor for because of weird interactions with CF meds...), for unexplained pain in my side (which she sent me to the ER for and was a side...
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    How much do you sleep?

    I'm in law school, so I'm CONSTANTLY sleep deprived, but if I can, I feel great and wake up easily with 9 hours of sleep a night. Anything else, I'm pretty tired. If I can, I'll sleep for 12-13 hours on the weekends, no problem. I need a LOT of sleep. When I'm sick or on IVs, I'll literally...
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    How does your clinic do ped lung function?

    I started PFTs when I was 6, and the first year or year and a half or so was pretty up and down, even though we know my lungs were stellar. I would have 130% FEV1 on one blow and 50% on another because I just didn't have technique. It took me a long time to get the technique down (into my early...
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    Therapy to manage psychological aspects of CF -- anyone see a therapist?

    I'm seeing a therapist for a number of things, but one of them is definitely the comorbid issues with CF. It's been helpful to have someone to talk to about these things who may not 'understand,' but that I don't have to worry about "freaking out," as I do with nearly everyone else in my life. I...
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    Interesting Novel about Character with CF

    I'm excited to see how this is. It seems like, at least from the descriptions, it focuses more on the relationships that this woman forms than her "battle" with CF, which I think is really valuable to young women with CF; I know that many of us struggle with accepting that we are desirable...
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    Life,School,...,Heck Everything Under the Sun, and CF

    I'm not sure, really. I just make it work. I would probably do better if I had some sort of schedule, but I also am in law school, and things come up all the time. I try to build exercise into my daily routine (walking to the next bus stop instead of the one closest to my house, for example)...
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    Salt and pulmozyme! Urgent!

    Yeah. It could be. Relax, it will get better when you start it again. Just give it a few days.
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    lung function has dropped seriously

    I'm disappointed in people's "advice" right now. Elizabeth, it's so obvious you care a lot about your son, and it seems like you are in close contact with your doctor. If they know you aren't doing Pulmozyme and hypertonic and are okay with that, then that is good. None of us are doctors and...
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    I'm so sorry to hear that your daughter is going through this. Please, get her therapy. 15 is a rough time, even without CF. With other social issues on top of that, it can seem insurmountable. Therapy can help her find better ways to cope. She isn't alone, even among the CF community. You sound...
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    where is the best and top-rated CF center?

    Seattle Children's has some of the best doctors in the US. Dr. Bonnie Ramsey, who was key in developing Pulmozyme and TOBI (a daily medication used to thin mucus and an antibiotic used to treat pseudomonas, a common bug in CF patients), is one of the main doctors at center. She also is in charge...
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    Parents with HSrs w/CF

    I know this is not going to make sense, but let it happen. It will be uncomfortable for you; it will go against everything that you have been trying to do for 16 years. But, he is going to continue to rebel as long as there is pressure on him to not rebel. If it has to happen, let him be...
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    Cayston in the Hospital

    Hi, My doctors usually just hold off on inhaled abx while I am admitted because I am already on Tobra or something else for the pseudo. If you want her on it, I would start by having a discussion with your doctors about her schedule. Could a new schedule be created that allows you to supervise...
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    Top Ten unusual things to bring to Hospital for an admission...

    1. Hair bands and bobby pins (I have a pixie cut but they constantly come in handy.) 2. French press and coffee (and coffee cup). Hospital coffee sucks and sometimes I want coffee at night. 3. My own pillow and blanket. 4. Folders (too many papers.) 5. My own towels. 6. My own bottle of pills...
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    Therapies: What do you do each day?

    Age 20, DF508 and N1303K. AM: Calcium and vitamin D Vitamin B Prozac SourceCF Morning treatment: 1 vial Xopenex 1 vial 7% HTS 20-30 minutes of vest while I do the first two nebs, sometimes Acapella as well. Tobi or Cayston dependent on the month Afternoon: Sometimes 20-30 min of vest...
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    Need to stop a sinus infection/ cold

    Are you at all familiar with Cystic Fibrosis? Do you even know what it is? It's a fair assumption that if a CF patient is being treated for their disease they are going to a "well known doctor who will give (them) the right suggestion," however, sometimes CF community members have ideas that...
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    Hospitalized belated Valentine's Day - need romantic hospital ideas

    You sound wonderful. I was in the hospital for my birthday. My friends brought food and we went to the cafeteria and took it over; it was about 7 PM and was empty. We then walked around the hospital and they decorated my room with steamers. Could you bring some nice stuff to decorate her room...
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    lung function

    20 year old female; 97% FEV1. 95% baseline.
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    PICC Clot

    They didn't find anything. No ideas what was up from the doc. It's somewhat improved now.
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    PICC Clot

    I'm in the ER right now. The rest of my veins lit up like lights this afternoon and the pain kept moving farther down.