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I did the test in the hospital. I tried doing it at home once but would you believe that I was not able to fall asleep with the thing on my finger? I think it's worth giving them a call! Just fyi, in the beginning it took me ages to get used to it. I simply did not feel comfortable at all...

Hi, I think night oxygen could help based on the feeling you have that you are "drowning" sometimes when you wake up. If you can get a sleep study done with your cf team that would be most helpful. My sleep study indicated that I desat to around 80% at some points during my sleep so I use it...

Great explanation, thanks!

I am not sure if I am interpreting this correctly but I feel that sometimes when I get a cold, it spreads to my lungs straight away and it seriously worsens my CF symptoms (I basically cough my lungs out for days until I am put on an oral antibiotic course); other times I get a cold and it...

I (30, female) suffer from the same problem.. I am constantly blowing my nose, especially after I have a coughing fit. If you find something that works, let me know! Good luck.

Congratulations Dave! Yay!

Hi, How long have you been below the 30% FEV1 mark? And post-transplant cf'ers - how long were you under 30% before you got your transplant? I am at 32% now. Thanks, enjoy your weekend! Vera, 30

Hey, thanks for the info. I'm glad to hear everything seems to be falling into place for you. I didn't know we had to continue doing our neb treatments after the TX, is this the case for everybody? So what was your outcome? My TX team told me that after TX, if everything goes according to plan...

Hi musclemania70, thanks for your reply. I was quite surprised when I read a few months ago that you had gotten a transplant after just 2 weeks on the list. It all happened so fast! I hear a lot of people mentioning that the recovery is a long, arduous road and I understand in part why, but...

Hi. Thanks for your thoughts. I didn't expect much of a response to my post, but decided to venture anyway. I think it must be difficult to explain in words the possible clusterf*ck of emotions that people go through in such a journey. Humans have always had difficulty dealing with the unknown...

Hi all, I am almost 30 and about to begin my transplant journey. Will get evaluated next month. This is opening a can of worms with a lot of soul searching type questions and thoughts, which I believe to be part of the process. I would like to hear from people who have received their...

I had a particularly bad day once last year when I started taking Prednisone AND Zoloft on the same day. Talk about a bad trip!! I was twisting and turning in the hospital bed all day with hallucinations, panic attacks, etc. The next day everything went back to normal and I should add that...

I'm on permanent disability benefits, and if I cannot afford something, my parents are more than happy to help. Just this year they bought me a car because it became very necessary due to my lack of energy. My parents do not hesitate to help me when it comes to my health issues.

I struggled with weight my whole life and I was always about 10 kg lighter than I wanted and should have been. I used to say, jokingly, that maybe when I reached 30 years of age I would finally start putting on the weight like every other woman. Suddenly, at 29, I gained 8 kg! No kidding. This...

I also feel lucky about my appointments. I always have a lung function test scheduled, followed by an appointment with the doctor to discuss the results and general stuff about the condition. I'm usually in and out of the hospital within 1,5 hours.

Shifting priorities. I started to get less depressed when my goal wasn't to go out or work anymore. When I had to stop working I finally realized that it was time to focus on my health and on not getting sicker, and then it's not so bad when you have to spend so much time working at it. To be...

I live in the Netherlands, and I will ask my doctor about it, but I don´t think he will prescribe it. Does anyone in Europe take Kalydeco off label? My mutations are: R334W and N1303K. Any help will be greatly appreciated. I also have some savings but I think the price must be off the roof. Thanks!

You're still focusing on the total number of people with cf and newborns etc, and not on the number of people on a transplant list at any given time. It doesn't matter if 1000 people are born with cf or not, what matters is how many of those will be on the transplant list at the same time (as...

I maintain that out of everyone waiting for a transplant in the US and in the NL, in the US they have a higher chance of receiving one. Not only do the numbers speak for themselves (I stated those in a previous reply), but just the fact that people in the US are able to receive lungs for a...

Hi twistofchaos. I think the numbers you chose for comparison purposes are not too relevant. What really matters is the number of people that are on the transplant list against those who get a transplant. The number of people in a country is not too relevant in this case. Based on research I...