Recent content by momuv2cf

my 18 year old daughter (deltaf508) developed cf arthritis this past year. pain in joints and the red bumpy rash...said her throat and lungs hurt as well. her cf doc sent her to the rheumatologist who prescribed meloxicam. it is an anti-inflammatory drug (ibuprofen didn't touch her pain). if...

Call Genentech. The makers of Pulmozyme. The have a lot of different programs for assistance in this area.

Call Genentech. The makers of Pulmozyme. The have a lot of different programs for assistance in this area.

Call Genentech. The makers of Pulmozyme. The have a lot of different programs for assistance in this area.

Okay, this is what happened to us. I have two girls with CF and our family is still all in the same house. I was told by Hill Rom that they think it highly unlikely that we would ever be approved for two vest machines. I explained that I would fight Medicaid until they were covered and even...

Okay, this is what happened to us. I have two girls with CF and our family is still all in the same house. I was told by Hill Rom that they think it highly unlikely that we would ever be approved for two vest machines. I explained that I would fight Medicaid until they were covered and even...

Okay, this is what happened to us. I have two girls with CF and our family is still all in the same house. I was told by Hill Rom that they think it highly unlikely that we would ever be approved for two vest machines. I explained that I would fight Medicaid until they were covered and even...

I had to quit coming on this website for a while because it was really getting me down. I just revisted all of your posts' and I am very grateful for the information. Faith stopped culturing the Mycobacterium for a while and now she has had her third culture in the past year. We are trying...

I had to quit coming on this website for a while because it was really getting me down. I just revisted all of your posts' and I am very grateful for the information. Faith stopped culturing the Mycobacterium for a while and now she has had her third culture in the past year. We are trying...

I had to quit coming on this website for a while because it was really getting me down. I just revisted all of your posts' and I am very grateful for the information. Faith stopped culturing the Mycobacterium for a while and now she has had her third culture in the past year. We are trying...

I use the Quick Clean Micro-Steam Bag by Medela. I am not sure if the neb cup is the same thing as the cannister but that is how I clean all of our neb supplies. I put the neb cannisters, masks, and mouthpieces in the bag along with the rubber and mouth piece of the OpticChamber. I put 1/2...

My first thought was the pee issue. But that is just my problem and I don't have the CF. I really laughed hard when I read that. Made my night. I thought I might be the only one silly enough to admit that! Anyways our family has had one for three years. We have the enclosure around it and...

My girls have been taking Zithromax for about two and a half years and they have not cultured P.A. again since they started. They have cultured many other fun bugs though!

I know I am not the adult with CF. But both my girls Meghan 9 and Faith 7 do 10% HS once a day and pulmozyme once a day. They also do TOBI and Colistine every other month. One is doing very well and the other is worse off with bacteria, but the HS loosens and allows them to actually cough...

I posted on the famiy section about my 9 year old daughter about this same issue. She was a size 8 at the end of August last year and she is now in size 14. She took Pred. burst about three different times this year and Advair. When I took her to the endocronologist he said that she has not...