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My first hospital used to do what Believing described and we got one neb cup for each med and used it for the day (multiple treatments). After morning neb they would just pop it in this bag and hang it by the bed to be used for the next treatment. Then it was thrown away after each day. My...

Melissa provided some great threads for you to look into! I have had a port for about 7 years and I love it. I have a power port (see link below for picture of it). they do make lower profile ports so maybe talk to your doctor about the options for it size wise. It's on my right upper chest...

I might be interested. What type of nutrition plan are you following?

I took the survey! Not sure if you can alter the questions at this point but the one asking about how often you attend a CF clinic doesn't give an option that would apply to most patients. The majority of patients go every 3-4 months when healthy and the survey jumps from 0 visits in the last 12...

Here is a link to a diabetes forum that may be helpful. Looks like some of the commenters there have experienced false positives due to some diabetes meds. Defintely check with your doc too as Ladybird said...

I voted! Good luck!

That is awesome! Way to keep fighting!

I'm so sorry to hear this. My prayers to her family.

This has been the standard protocol for quite a number of years at the two CF clinics I've been to. It can seem kind of intense but like now said it's actually to protect us and other CF patients from spreading bacteria to each other. Hospitals are actually really germy and I picked up several...

As the others have said different machines can give different results. I would tend to go with the results from your CF clinic. Sometimes your pfts can go down even though you don't feel bad. That's happened to me. Keep on top of your treatments and exercise. If you're worried about it then add...

I think you've asked about it before and I know I've seen other threads on it so do a search and read up on what others have said to you and other members previously when medical marijuana has come up. What benefit do you get, or hope to get, from it? How exactly did your doctors treat you...

Here is the SSA website that shows the requirements to qualify with CF. not sure about the heart issues though in addition to the CF. You could call the CF legal hotline or Disability advocates for CF. Julie runs the second site and has extensive experience with the disability process for people...

My vit D levels were chronically low and i would occasionally be put on a super high dose of Rx D for a month and then be retested at my next appointment. that generally worked for a while at least to keep my levels up but they would always fall again. so now I'm on 5000IU vit D daily in...

I will reply but I'm heading out for the afternoon and need to gather my thoughts anyway. I will say that you are wanted here and that, if I may offer a suggestion, it may be better to have this particular conversation through private message or email with the individual people that you have...

Believing, pulmozyme works by breaking down the DNA in the mucous in the lungs to make it more loose and easier to cough out. This combo of lumacaftor and ivacaftor would be for double delta's specifically and treats the underlying cause of CF. So while pulmozyme is for symptom management...

Thanks dank!

I think it's highly unlikely anyone on this forum is unaware of the outcomes for CF. I also don't think the majority of people spend all of their time thinking about the fact that they may die earlier than the average person. Sure it's a hard reality that we have to face and think about...

Thanks for sharing this Melissa. No one relishes in thinking about their death but what a gift, when faced with such a hard reality, to be able to tell your family exactly what you want and need to feel more at peace.

i found their blog: http://321picklepits.blogspot.com/ doesn't appear to have been updated in about 2 years. I've linked to a couple posts below that seem especially relevant to your questions about Spain specifically. http://321picklepits.blogspot.com/2010/06/viva-espana.html...

I had purchased my STD and LTD policy through my employer at the start of my employment. My guess is that if it requires a disclosure of CF it would be extremely difficult to purchase either type of policy through the market place because the odds are so high that you'll use it. I did not have...