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    Disability and working part-time

    Hello everyone, I was wondering if anyone is on disability either SSI or SSDI and is working part-time. Can you explain the process to me? I am confused and calling SSA made me even more confused. I really want to work part time but I am afraid they will take away my benefits from me or decide...
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    Amikacin Recalled

    Amikacin recall I had a horrible reaction to my skin and port. I got a massive blot clot in my jugular below the port and above it. My skin around the port literally was peeling off layer by layer. It looked absolutely disgusting. It was so itchy and irritated my skin was on fire. After we...
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    Amikacin Recalled

    Did anyone receive the tainted vials of recalled Amikacin from Tevo Pharmaceuticals this past year? I was one of the lucky ones who received every lot recalled and suffered complications from it. I was curious if anyone else did and if so what type of complications have you had. Second...
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    Zyvox Acne Rash Advice

    I had the same exact reaction to Zyvox however my rash was so severe on my entire face, neck and chest my doctor said I was allergic to it. It was the worst most itchy painful experience. I tried topical creams prescribed by my dermatologist and it never touched it. I hope the Selsum works and...
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    Knoxville Tennessee CF Center

    I was hoping someone on here could give me some information about the Adult CF Center in Knoxville. I am moving next month and need to get acquainted with a new center. Any information would be great. Thanks
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    Amikacin IV recall- Anyone exposed to this????

    I wanted to know if any of my fellow CF'ers were aware of the FDA recall for IV Amikacin solution 2ml and 1 gram vials????? Recall due to potential glass particulate matter. If so did anyone exhibit any of the listed symptoms???? To get a full description of recall and the lots affected go to...
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    Dating another CF person

    What I don't understand is if neither one of us have Cepacia, we both know exactly what infections we have, we do all of our treatments and tell each other when we aren't feeling well and stay away from one another when we are sick how can we make each other sicker? It is so disheartening to me...
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    Dating another CF person

    Just curious if anyone else has dated or is dating another person with CF?
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    Is a decline inevitable?

    Emmalou, Well I think the disease varies from person to person. In my 20's I was like you high FEV's, exercised like an animal, had good weight, non-diabetic went in for regular tune-ups 2-3 times a year. I was even a police officer for 10 years. I have been on and off IV's my whole life...
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    Non Tuberculosis mycobacteria

    Hey MichaelL, Sorry its been so long since I've been on here. I am glad to see my post is continuing and people in the CF community are talking about this. Since we last spoke my Infectious disease doctor said minimum 6 months IV's now he's extending it to minimum year if not longer. I am still...
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    How to explain CF to your coworkers...or do you?

    I worked as a Police Officer for 10 years. I wasn't sure initially whether I should say anything to anyone or not but I eventually had no choice but to. I know they say that by law you don't have to disclose your medical information but in my profession it was mandatory. I eventually told my...
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    Non Tuberculosis mycobacteria

    I saw an Infectious Disease doctor today. Since I am resistant to all the oral meds the doc is going to put me back on IV meds. It will be a long course of IV Amikacin and Cefoxitin along with oral Biaxin (Clarithromycin). He thinks somewhere up to 6 months. Its crazy to think that this bacteria...
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    chronic pain

    Katie615 I too have been suffering from chronic pain recently and I think it has a correlation with the NTM too. My chest pain really gets to me sometimes. I cough so bad sometimes I just lay on my bed and cry. My CF doctor wont to prescribe pain meds and my primary doctor always pushes it back...
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    Non Tuberculosis mycobacteria

    Windex & Katie615 I was trying to give you both a thumbs up for the needle size....def the best size for the port. 20 is too big and sticks out too much. I access my own port and usually put a piece of gauze under the wings as I call them even though my doctor doesn't like that. I just think it...
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    Non Tuberculosis mycobacteria

    Thank you so much for all your replies. I am in a way glad but NOT really to hear that I'm not the only one dealing with this crap. I am one of those cases who has become resistant to every drug used to combat NTM minus Biaxin and Cefoxitin. I am going to see an Infectious disease doctor next...
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    Not sure if anyone has heard about this or not but I have been getting a lot of information about this company in Bonita Springs Florida that is doing adult stem cell treatments. They actually have a section about Cystic Fibrosis along with other aliments. If you want to look into it they have...
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    Non Tuberculosis mycobacteria

    I just had the cefoxitin via my port as well for 8 weeks along with something else I cant even think right now ughhhhhh then the idea was to keep me on oral meds the Biaxin and Zyvox permanently. Then I got that awful allergic reaction to the Zyvox. Are you doing the IV regiment for a year? Im...
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    Anyone else HATE dealing with insurance?

    I HATE insurance companies. I fight on a regular basis with them on just about everything. They deny every medication. EVERY medication when there is plenty of documentation indicating why I need the damn stuff. I will get out of a 2 week hospital stay and they will ask why I need a certain...
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    Non Tuberculosis mycobacteria

    Thanks for responding Katie615.... I have done never inhaled Amikacin but I usually do that via IV. I have been on and off the oral doses Ethambutol, Rifampin and Biaxin for the past few years on one year to 18 months then a few sputum's show up neg so I get a little break them BAM its back...
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    Non Tuberculosis mycobacteria

    So I have been dealing with this crap for over 3 years now. On meds off meds, oral then IV. Just finished an 8 week Stent of IV meds. I was feeling pretty good but now I'm starting to feel fatigue again and coughing alot. My PFT's tend to drop when the Myco is active. My body has become...