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Cystic Fibrosis Message Board


Cystic Fibrosis Board Index


There are about three different vest companies -- we have "the vest" which is a hill-rom product, there's something called a smart vest made by electromed and then there's RespirTech which has the InCourage System. I believe they range in price from about $12,000-16,000 US dollars.

We use albuterol and atrovent nebulized (duo neb), which are bronchiodialators to open up the airways during cpt/vest. Some people do it before, or use a puffer/inhaler (albuterol). Because DS has cultured pseudomonas, he has to nebulize tobi nebs (tobramycin) twice a day, every other month after vesting. He's on pulmozyme before bed after doing CPT.

As for the enzyme issue. I remember similar problems when DS was that age. I'd constantly ask the clinic doctors, dietician what normal poop looked like. Sometimes he'd poop 2-3 times during a diaper change. They'd tell me I'd know. Well I didn't, that's why I was asking. Plus they weren't concerned because he was still at an acceptable weight. I know now he probably wasn't getting enough enzymes. He also had reflux, so he was given zantack (an acid reducer) twice a day, which also helped to make the enzymes work better. We would gradually increase his enzymes by half a capsule over time to see if that helped. Usually it did. When he got older, and started eating regular food instead of formula, his stools started to look normal.

Also, we kept him on formula until he was about 18 months old. He'd get whole milk at daycare and would eat what the other children were eating there, but for us it was always a struggle and we felt it was more important that he get those extra calories and nutrition.
well speaking of secretions, I recently went to Emergency to check my lungs because I thought I was getting a cold, and it was late at night, so I went there. They asked me if I was recently prescribed a different drug for my lungs because my secretion have decreased, to be honest, I didnt even know that was possible. I guess it is. BUt WOO! for me.

Also wanted to bring up treatments everyone has been talking about, I used whats called a percussor, I dont know if its the same as the "flutter" not to sure. It works amazing and gets all the yucky stuff out. I recently purchased a nebulizer from Ebay which I was skeptical about at first but when I got it, it made my life alot more free. It a handheld one, and its cost me about 340$ very expensive, but I can drive in my car, and I can use it at work, its very degreet. I use it when I go away on trips instead of having to worry about if they have plugs to accomodate me in different countries. I travelled around Nov2007 and it was to Europe and I thought the plugs there would accomodate me, but to my knowlegde (this was before my recent purchase of the lil machine) the machine stopped working three days into my visit. Then I had to go to the hospital which was hell because no one could speak english, try translating Cystic Fibrosis in another language. SO STRESSFUL. I went on an oxygen machine for about 1 week, it did not help. I flew home early, then I stayed in hospital for about 2 weeks due to the lack of meds I had while I was over there. I will never take that chance again, and thats when I decided to purchase this lil machine. It runs on double A batteries. Its amazing. My job totally understands if I want to use it at work, because you cannot hear it, it does not make a peep of noise. Its so convience, if anyone is interested in seeing it let me know ill post the website for it.

I also have been doing alot of research on having a child, due to the fact that when I was born the life expentancy for a child with CF is around 30 or so depending on how you take care of yourself or not. I am only 21, but I am looking for have children quite soon, like within the next year, because I have 75% of lung capacity right now, which is 10% more of what a child with CF my age should have. I figure if I start now, my body can hold out to give birth and be able to handle the breathing aspect once I am into trimester three. I am asking seeing that some of you ladies have had two children, is it difficult once you are growing and in your third semester?? I also have diabetes so I am very incredibly careful, I dont want to loss and child, or any amputated limps.


LISTEN UP FOR THIS ONE!!! I RESEARCHED THIS ALL AND CHECK WITH MY RESPIROLOGIST. I was also checking into Tobramycin. People with CF who have NOT developed Pseudomonas should NOT, I repeat SHOULD NOT.. hehe be on tobramycin, and let me explain why, due to research now, tobra is the only drug that is currently treating Pseudomonas, and if we take it now our bodies will become immune to it, then when we have the bacteria that can be fatal to us such as Pseudomonas, we will not be able to fight it, and then.... worst comes to worst, we may die.
Hey Toomuchdetails, that is great about your secretions! I also was told by the CF nurse that they dont try to irradicate staph because it can cause Pseudomonas to grow. Have you been told that as well? Hope you have all the babies you want, and stay in great health.





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