Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 My kids have been on it daily since diagnosed! Its good...no adverse side effects! Rosemary in NY with 3 children (13, 11 and 7) with CF. I have a dog named TOBI and have coined the phrase " BREATHE DAMMIT " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 I wanted to get back to you asap. My Maureen, 13yowcf, has been on pulmozyne for 3 or 4 yrs now. She takes it 2xs a day. Pulmozyne is a mucus thinner. This is good after pneumonia I know of non cf kids who go on it for a short time after serious pneumonia. She maybe on this long term if it helps with productive coughs. Meg mom of 3 2wcf Quoting : > i have a 27 year old daughter wcf. She is just getting over her > first bacterial pneumonia. She does not tell us as parents much > about how she is doing (besides being 400 miles away) for she does > not want to worry us. She did tell us this morning that her doctor > has now started her on pulmonzyme inhalation. she did not tell us > why for she is on loads of other meds through her nebulizer. She > does have asthma and diabetic. Does this new med mean that she could > be starting to progress fast or is this as I read in the PDR that is > to prevent progression of the CF. I will call the CF clinic here in > Spokane but they are not open until Monday and I am anxious to know > more about this new drug. Thank you for any information that you can > tell me > > _______________________________________________ > Join Excite! - http://www.excite.com > The most personalized portal on the Web! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 My son tyler 8 wcf has been on pulmozyme for as long as i can remember.They told me it just helps thin any mucus in the lungs making it easier to get up and out. Patty > i have a 27 year old daughter wcf. She is just getting over her first bacterial pneumonia. She does not tell us as parents much about how she is doing (besides being 400 miles away) for she does not want to worry us. She did tell us this morning that her doctor has now started her on pulmonzyme inhalation. she did not tell us why for she is on loads of other meds through her nebulizer. She does have asthma and diabetic. Does this new med mean that she could be starting to progress fast or is this as I read in the PDR that is to prevent progression of the CF. I will call the CF clinic here in Spokane but they are not open until Monday and I am anxious to know more about this new drug. Thank you for any information that you can tell me > > _______________________________________________ > Join Excite! - http://www.excite.com > The most personalized portal on the Web! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 , Pulmozyme breaks down the dead white blood cells that contribute to a thicker mucas in people wcf (so it helps to thin the mucas). My grand daughter has been using pulmozyme once a day since she was dignosed at 3 months old. I would not worry that it has been added to your daughter's treatment. I think thay it is a good thing. Gale > i have a 27 year old daughter wcf. She is just getting over her first bacterial pneumonia. She does not tell us as parents much about how she is doing (besides being 400 miles away) for she does not want to worry us. She did tell us this morning that her doctor has now started her on pulmonzyme inhalation. she did not tell us why for she is on loads of other meds through her nebulizer. She does have asthma and diabetic. Does this new med mean that she could be starting to progress fast or is this as I read in the PDR that is to prevent progression of the CF. I will call the CF clinic here in Spokane but they are not open until Monday and I am anxious to know more about this new drug. Thank you for any information that you can tell me > > _______________________________________________ > Join Excite! - http://www.excite.com > The most personalized portal on the Web! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 , I think it is great that you are learning so much about CF meds and therapies. A great idea so you know what your daughter is discussing with you. Pulmozyme is by no means new. I remember the day it was released to the public, I am going to say back in 1993 or somewhere around that time. It was the most exciting day of my life, and my sisters life. We felt like it was " the cure " . No new meds for CF had been released in years for CF and here was one that sounded so hopeful. And it was. It thins the mucous and much easier to get it out. As we use so many calories coughing, this also allows someone to use their calories for weight gain. Of course, this is not a " weight gain " diet plan, but it allows a few extra calories to hang on . Your daughter is tremendously lucky to have gotten to age 27 and not needed Pulmo sooner. And having her first infection at 27 is remarkable. Do you think she is down in the dumps from this? If she is depressed, suggest to her to talk to the CF team. They may be able to help her, or suggest someone to talk to. CF adults have a total different concerns than the kids and it is another adjustment to make. Good luck to her. Joanne Schum luckylungsforjo@... > > i have a 27 year old daughter wcf. She is just getting over her first > bacterial pneumonia. She does not tell us as parents much about how she is doing > (besides being 400 miles away) for she does not want to worry us. She did > tell us this morning that her doctor has now started her on pulmonzyme > inhalation. she did not tell us why for she is on loads of other meds through her > nebulizer. She does have asthma and diabetic. Does this new med mean that she > could be starting to progress fast or is this as I read in the PDR that is > to prevent progression of the CF. I will call the CF clinic here in Spokane > but they are not open until Monday and I am anxious to know more about this > new drug. Thank you for any information that you can tell me Joanne M. Schum Cystic Fibrosis Bi-lateral Lung Transplant Recipient September 12, 1997 University of North Carolina Hospitals Chapel Hill Residence: Upstate New York email: luckylungsforjo@... Manager of: Transplant Support - Lung, Heart/Lung, Heart http://groups.msn.com/TransplantSupportLungHeartLungHeart " Taking Flight - Inspirational Stories of Lung Transplantation " Compiled by Joanne Schum Authored by lung recipients around the world http://www.trafford.com/robots/02-0497.html http://www.trafford.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 Pulmozyme is a mucus thinner. My daughter has been on it since before she was 18 months old. it just makes it easier to move the mucus. Many people are on it (at least half of the people with CF that I know- online- are on it) Don't worry too much it is a very common med and doesn't necessarily mean that your daughter's CF is progressing. Mom of 5 with CF and one on the way Pulmonzyme i have a 27 year old daughter wcf. She is just getting over her first bacterial pneumonia. She does not tell us as parents much about how she is doing (besides being 400 miles away) for she does not want to worry us. She did tell us this morning that her doctor has now started her on pulmonzyme inhalation. she did not tell us why for she is on loads of other meds through her nebulizer. She does have asthma and diabetic. Does this new med mean that she could be starting to progress fast or is this as I read in the PDR that is to prevent progression of the CF. I will call the CF clinic here in Spokane but they are not open until Monday and I am anxious to know more about this new drug. Thank you for any information that you can tell me _______________________________________________ Join Excite! - http://www.excite.com The most personalized portal on the Web! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 Hi , This drug is not really " new " . My daughter has been on it for over 10 years (she was in the trials). I don't believe it means her cf is progressing, actually I am surprised your daughter hasn't been put on it before. The PDR is right, it is to prevent progression. I believe it has done a lot for my daughter in keeping her lung disease under control. Her FEV1 is still in the 90's. She does a daily inhalation of pulmozyme, your daughter could be on it twice a day, and it only adds 10 or so minutes to her breathing treatments. I really think it is as close to a wonder drug for CF as we have so far. good luck, M mom of Nick age 21 nocf and age 19 wcf Quote Link to comment Share on other sites More sharing options...
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