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Cfers, are you all planning to get a booster shot once available? Asking for the Cfers that have low FEV1 but not transplants

any cfers use this machine? If you do can you tell me your experience with it?

Hi, I was wondering if any CFer's are in the following boat and can give me guidance. I am becoming eligible for Medicare soon and will have to sign up for a plan. Currently, the copay for Trikafta under part D prescriptions is just insane. I would never be able to afford it. I do not...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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.

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?

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...

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...

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...

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...