bagged2drag
Active member
As far as the Tobi, I have been using it on and off for about 5 years now. I usually get very hoarse when I use it, and sometimes feel very tight chested. However, If I stay at it for a few weeks like I "should," it often does help reduce my cough a little. I will usually double up on my duoneb when I do the tobi just to help with the tightness. I recently started hypertonic saline too, which seems to help some, it seems to keep things loose. I don't really know if the tobi is worth it though, the bit it helps is usually negligable unless it is assisted with an oral antibiotic like Cipro. That is the only time it substantially helps, which is only about 1 or 2 times a year. I usually just choose to go in for I.V. antibiotics if I am starting to feel very cruddy.
I can relate to many of the problems many other experience here. I had a moderate case of CF growing up. I experienced many infections and miserable weight gain/ digestion problems. My PFT's were pretty good through my teenage years though. Now my doctor considers it a moderate to severe (advanced) case. I almost always have a cough, usually within 2 weeks after my i.v. treatment is done. I have a hard time gaining weight (5'8" 125lbs male). I have DIOS so I get obstructed severely at least once a year, had to have surgery for it in 2000. My FEV1 is usually around 35%. No matter how much pancrease and enzymes I take, my vit. D and K levels are nearly non-existent. last appt. there was no trace. I have severe arthritis already, and sometimes have horrible night vision from the vitamin deficiency. Oddly though, aside from the artrhitis, I really don't feel that bad though. I guess I am accustomed to it enough that I don't let it hamper life too much. I had 3 kidney failures already, 1 time severe (something called TTP) and 2 times from medication reactions. I also had rhabdomyolysis 3 times. Those things, as well as the DIOS and subsequent surgeries, were really much worse than the normal everyday symptoms of cf. All in all, its still very frustrating though.
I can relate to many of the problems many other experience here. I had a moderate case of CF growing up. I experienced many infections and miserable weight gain/ digestion problems. My PFT's were pretty good through my teenage years though. Now my doctor considers it a moderate to severe (advanced) case. I almost always have a cough, usually within 2 weeks after my i.v. treatment is done. I have a hard time gaining weight (5'8" 125lbs male). I have DIOS so I get obstructed severely at least once a year, had to have surgery for it in 2000. My FEV1 is usually around 35%. No matter how much pancrease and enzymes I take, my vit. D and K levels are nearly non-existent. last appt. there was no trace. I have severe arthritis already, and sometimes have horrible night vision from the vitamin deficiency. Oddly though, aside from the artrhitis, I really don't feel that bad though. I guess I am accustomed to it enough that I don't let it hamper life too much. I had 3 kidney failures already, 1 time severe (something called TTP) and 2 times from medication reactions. I also had rhabdomyolysis 3 times. Those things, as well as the DIOS and subsequent surgeries, were really much worse than the normal everyday symptoms of cf. All in all, its still very frustrating though.