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  1. M

    Need to vent

    Hi Cfers, I just need to vent. I dont know how anyone stays positive about this disease. You are all the only ones who understand the daily struggle of CF. I have no family members who have it so I come to this board for info and support. I just feel so angry, deflated, depressed. I dont know if...
  2. M

    went into emergency room last night

    my fellow CFers. I have been suffering with pressure in my left lung since tues. It comes and goes...every few minutes. I also had a fast heart beat (not terrible) around 95 beats per minute. So finally last night I went into the ER they gave me every test for my heart and said all was good...
  3. M

    VX 770-will it help us?

    So I am super excited about the VX770 because from the internet research I have done it seems that it "may" just help us too. The G mutation is a class 3 and R117H is a class 4 but I think from my understanding they tested the G mutation because of the size of the population. G has 4% and R117H...
  4. M

    Tumor operation on face

    Ok, so this might sound like a stupid queston but I just got diagnosed with a parotid gland tumor (which is on my face). It is 1 cm and benign. I have had the tumor for a year and a half and it has not grown. I just went for a second opinion and the doc says I should take it out...which is what...
  5. M

    Questions for brainy Adult CFer's about new study drugs

    Ok, so there are many really intelligent people on this site and I need help. I am currently enrolled in the PTC 124 Ataluren study. My FEV1 is at 40% (on a really good day). So I have started the study and I really was wondering what all of these drugs are going to do for us? I understand the...
  6. M

    PTC 124 (Ataluren)

    Hi all, I have just started the PTC 124 and would love to talk to others out there who are also on the drug or placebo. I know there are approx 200 people in the trial and I have spoken to 3 so far. If you are on the drug and would like to pm me-please do. This really might be an amazing, life...
  7. M

    cold turned into bronchitis

    Hi all, I had a cold last week---the usual---coughing--mucus, sneezing, stuffy nose....misery It has now turned into Bronchitis and I cannot breath. There is a heat wave in NYC which is making breathing outside (not an option). I am currently on a azithromycin (500 mg) once a day. Xopenex...
  8. M

    cold turned into severe bronchitis

    Hi all, I had a cold last week---the usual---coughing--mucus, sneezing, stuffy nose....misery It has now turned into Bronchitis and I cannot breath. There is a heat wave in NYC which is making breathing outside (not an option). I am currently on a azithromycin (500 mg) once a day. Xopenex...
  9. M

    Any PTC124 (atalurens) out there?

    Hi, I am waiting to start the PTC 124 (ataluren) study in nyc. I talked to one or two other Cfer's who have started. I know there are others who are also on the drug and was hoping you might want to PM me to share progress? I am way excited about this drug (so is my doc). I know alot of...
  10. M

    PTC124 (Ataluren)

    Hi, I am wondering if anyone has started phase three trial yet for Ataluren? My CF center is not on board yet. I was wondering what has been experienced.
  11. M

    Parotid tumor (swelling)

    Hi All, so I went to go see an ENT for a small lump by my ear...basically on my face He said I have a parotid tumor. I went for a CT today. I was just wondering if any CFer's have ever had this prob? Can it be related to CF?
  12. M

    Collapsed lung

    Hi All, I am out of a 9 day stay at the hospital. My right lung collapsed for the first time two weeks ago. I am a 39 year old female. I really never thought this could happen to me. I had a chest tube in and the lung inflated again but now I find myseld scared and really questioning if I...
  13. M

    anyone else in my boat-mucus question for CFer's

    Ok, here goes...I am a 38 year old CF female. I have been basically throwing up my whole life from CF. Most of the time it is in the morning...so I NEVER eat breakfast. Sometimes if I have too much food it seems my lungs get irritated and clogged and all the food comes up with lots of mucus...
  14. M

    Anyone know about private full time disability??

    Hi all, I am new to this forum. I am a 37 year old single female CF'er. I have been working from the age of 15 (full time). I have no family members to help me out if I become sick or disabled. I own a house for 5 years and I worry about what will happen to me if I can't work anymore. How...
  15. M

    Vomiting all the time-help?

    I am new to this so please forgive "the subject". Maybe I should start from the beginning. I am a 37yr old female dx at 14 with mild CF. Well, now it is pretty bad although denial is my middle name. I can't tolerate Tobi so I pretty much do Albuterol, Pulmozyme, and HTSS once a day. I am...
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