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vertex drug Edited post

Female Age: 38(in 2 weeks) Height: 5'3 Weight: 115

Thank you so much for your responses. Great info on this site. It also make me feel like there are people out there that understand and are dealing with the same things I am. I might actually try th podhaler sometime. I have to admit I' m a little nervous to try new inhaled meds because I' ve...

I can not tolerate TOBI (causes tightness) but a new cf doc mentioned this to me. Does the pod healer work for anyone when TOBI did not. Is it tolerated well? Cayston is the only inhaled antibiotic I take now. 2 weeks ago I started the vertex study drug for ddf508 so I think I may wait about...

My mom actually has a stand that you put your regular bike in to convert it to a stationary bike. You would probably want to put it in another room though. I looked this bike up on amazon it looks like you could stick in the corner somewhere since it seems smaller than most exercise bikes...

I love this concept. A cabinet for everything would be great beside the bed. It aggravating to have a nicely decorated bedroom but have medical supplies everywhere. It would have to be ventilated as someone else stated maybe the back out or partially out where the vest and nebulizer would sit...

How are you keeping weight on with these diets? I understand if you're substituting with packaged glutten free items but those can be unhealthy . And did you take less enzymes when you switched diets? It just seems when I try to clean up my diet I lose weight. I like to weigh 115 (I'm 5'3)...

I understand how you feel. I went for a lot of years without any inhaled antibiotics because my lungs are so reactive. I eventually had to stop pulmozyme because of coughing up blood. So I went for a while with just albuterol and wondering if there would ever be anything I could take because I...

Doyogawithme.com is a site that I seen on a forum. It could have been here I can't remember. It has free videos I believe. I planned on trying it but haven't yet.

Thanks everyone for responding. The budesonide comes in liquid form in a plastic ampule labeled for nasal use only. The prescription came with two neil med bottles. The first bottle is for distilled water(240 ml) and a saline packet. Then you are supposed to pour 100 mls of the saline...

I was recently prescribed budesonide to mix with my saline rinses by my ENT(Twice daily). I was curious to know if it has helped anyone. Planning on having surgery on my next admission but hopefully that will be a while. Any advice would be great.

Having children myself and doing tons of home ivs I would suggest staying in since one of your children has the sniffles. You do not want to get sick and possibly have to be admitted again or have to stay on ivs longer. Antibiotics kill the bad and good bacteria so your immune system will be...

I'm so sorry your dealing with this. Several years ago the same thing happened to me. It can be very scary. Are you on pulmozyme? I ended up being taken off of it indefinitely because I was having so much hemoptysis.

Sounds like you and the hubby need to have good long talk about his mom. And if she can't keep her comments to herself she needs to find another place to live. You shouldn't have to put up with that in your own home. Also consider speaking to your doctor as others have suggested. I don't...

I think it was designed for pseudomonas . I have pseudo and mrsa and it helps me. Maybe someone else will give their input. Anything is worth a try if it could help. Have you talk to your doctor about cayston?

If you don't see an improvement in 6 weeks I would not give up up on cayston yet. In a 6 week time period you would only have had one treatment if you're alternating 28 days on/off. So it could take longer but I can't really remember. I know how frustrating it can be trying a new treatment and...

What a great story! Congratulations!

I absolutely love cayston. I can't take Tobi ,colistin or pulmozyme. I haven't been in the hospital for two years and the only thing I have done different is starting cayston around that time. Before cayston it was one to times yearly. Now I have had to be on oral antibiotics some but not iv. I...

Where are you transferring to? Would love to hear about your experience later on. I also live in AL. The only advice I could give would be to be upfront and honest. You also might want to ask questions about admissions if you ever need to be hospitalized later. Good Luck!

I'm so sorry for your loss. My thoughts and prayers are with you.