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My concerns are that his infectious disease doc just doesn't seem to believe abscessus is a real problem so she is only reluctantly treating him due to his very aggressive demanding mom (that's me). She holds this belief firmly even though his PFTs were declining steadily prior to treatment, he...
Joni, Were you able to eradicate the m. abscessus? Do you now have negative cultures or just continuing to treat? My daughter is 15 and has been culturing m. abscessus for about 2 years now. We have been unable to get a negative culture, even with aggressive treatment. We are looking into a...
Hi Tonya,
I also have m abcessus .. I was treated at first w/ IV Cefoxitin (for 7 mos straight) along w/ oral Clarithromycin & inhaled Amikasin.. I am still on the Clarithromycin & Amikasin w/o any stops for over 3 yrs now..
I have heard that drs. dont want you to do mono therapy so that you...
Anything is possible. I was a late diagnosis @ 44 y/o , I am also not one to cough so much. I dont think a dr. would order a test for cf w/ a whooping cough diagnosis, but who knows ??
Johanna & Tom, My thoughts & prayers are with you & your family.. I am so sorry for your loss. Breathe easy Micah... I have a feeling another angel named Melissa was there to greet you on your journey to our heavenly father. RIP little one </3
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>KMV77</b></i> I think the main thing is my children. I sometimes worry about leaving them without a dad due to cf. Its hard to not think about the future having children. My wifes dad died at 42 from a heartattack in 1998 and I...
I agree w/ everything Jenn (justducky) said .. I am in a pulmonary rehab program & I love it ! So ppl in the program , If their o2 stats are low they use oxygen during the workout .. Take care <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
Hey Jenna,
Sorry you are so miserable <img src="i/expressions/face-icon-small-sad.gif" border="0"> Have you discussed your feelings w/ your drs ? Maybe they can come up with an alternative for you.
I have been on the same oral abx (clarithromycin) & inhaled abx (Amikasin) for over 3 yrs...
I had a hematoma once from a bad access. I doubt that your needle would come out due to coughing since you need to do a nice little tug to get it out. but maybe im wrong about that. I would let it calm down completely before re accessing it again . How much longer for IV's ? May they could do a...
Hey guys,
Movin' tonight's chat to tomorrow night due to the holiday.. Hope you can make it tomorrow night, thurs, @ 8PM EST !!
<img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
Hi Betty,
Sorry you are going through so much, but thank God you switched clinics ! Didn't they do sputum cultures at your old clinic ??
I was going to ask you if you were or are going to take Kalydeco as I noticed your mutation. I hope you can get it..
It sounds like you are doing all you...
Hey Kayla, I dont know if ppl get into chat on other nights, but wednesday night is usually a safe bet <img src="i/expressions/face-icon-small-smile.gif" border="0">
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