Search results

Thanks Dave. And you could get lungs anytime since you've been on the list right? Here they have 2 lists: the normal list and the high urgency list. Only people in the high urgency list can get lungs and those have to be really sick and close to dying.

I'm not talking about FEV1 needed to be considered for evaluation, but to actually be transplanted. I live in the Netherlands and I was informed today that only patients with an FEV1 of 20 or below 20% are able to get organs due to shortage of organs! Thanks for your input. Vera 29 Netherlands

I am 29 and have been dealing with hoarseness almost all my life, even before I was diagnosed with CF (I was diagnosed at 15). As you can imagine, I have tried a lot of things to make it go away, from chemicals to natural products and the only thing that really works is to rest my voice for a...

Damn, I know what he's going through all too well. I was diagnosed at 15 and I became a real rebel monster. I was on a mission and that was to destroy myself. It was very difficult to reason with me, but I did continue to do my treatments, because I never minded that, it was a few minutes every...

My doctor told me that I must check with him before buying over the counter pills because a lot of drugs out there can have an effect on our respiratory system, especially certain sleeping pills. This isn't enough to harm healthy people but it can affect people with CF.

Gracie4 - I think it's better for you to write a separate post with your question. I think more people will read it.

I only culture Pseudomonas and my doctor told me that Cayston is for Pseudomonas... Maybe if you also have that it could be helpful.

I am going in for a lung function test 6 weeks after I start Cayston so that they can see if there is an improvement in FEV1. Do you guys think this is realistic?

Thank you! All the best to you and your son and I'll keep you posted.

Hi jshet, no problem at all! I am starting Cayston in an effort to improve FEV1. I rarely have to be admitted to hospital due to new infections (2x in 29 years), but I'm at 31% FEV1, so my doctor is doing all he can to keep me away from a transplant for as long as possible. I was admitted last...

It's difficult not to have high expectations when I read your answers, hope it will work for me too!

Congratulations to you both, it's great to hear! :)

Wow that is great to read. To think of a 7% increase in FEV1 is just crazy to me. Let's hope for the best. Thanks for your input.

Hi all, I will start using Cayston in a couple of weeks, 3x a day. I have used both Tobi and Colistin, but never Cayston. My FEV1 has been in the 30s for a long time. Any impressions you'd like to share about this medicine? Thanks! Vera, 29

My nose is only cold if I'm cold. I do have to blow it quite often.

CF treatments are like bad sex.. you're embarrassed about it but at least you have it (them). CF treatments are like a kick in the butt.. dreadful but keeps you grounded. If Snoop Dog had CF he'd be like "oh yeah.... more weed pipes"

Hello, I have a tattoo on my forearm and it's never been a problem as far as IV treatments go. I have been considering getting a half sleeve on one of my arms but I am afraid that it might interfere with IV treatments and anything related with veins in that area. I certainly won't get a tattoo...

Hi there, My lung function has been in the low 30s for a few years and everything is getting harder and harder as far as my energy goes. Thankfully I am not working and I almost never have hospitalizations (I've had 2 my whole life), but every sort of physical exercise/activity requires some...

It sounds like your husband isn't getting the quality of treatment and care that he should be getting. I second what people have said here and suggest that he seeks a CF team in the area (if this isn't already happening). But it sounds like there's some things that you could be missing. Each...

I dip my neb cubs into a bowl with hot water and soap for 10 minutes, then into a container of ethanol and leave it there for another 10 minutes. These are the processes for cleaning and sterilizing. Once a week I boil for 10 minutes with a tad of vinegar. Then I add salt and pepper and I eat...