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Best time to do Pulmozyme?

anonymous

New member
My daughter has been on Pulmozyme since she was almost 3. We have always done it first thing in the morning. Now that she is in school, it is very hard to get everything done in the morning. We have just moved it to after school. I was wondering if anyone has played around with different times and noticed any difference in howyou feel,how affective it is at the different times. I definately prefer for her to have it in the morning, but after doing all the treatments, she has a hard time eating and doesn't feel well enough to go. She can't eat first because that also makes her not feel good.
 

Liza

New member
Hi, My oldest daughter started doing Pulmozyme when she was 9yrs. old, she's now 16. We've always been told that you can move it around from morning to evening but to try and stick with one time frame. But that you can switch it just not morning one day and evening the next. You get the idea. Now, when my daughter started coughing alot at night they recommended she do it in the AM. For a while we did that and it seemed to clear things up as far as not coughing so much at night. Coincidence? I don' t know. We eventually changed it back to nights because that is what she has time for and her coughing didn't come back. Now my other daughter didn't start using Pulmozyme until she was 11, she's 13 now. They started her they say because it was "time" she started not because, in my opinion, she needed it. She's been the healthier one, only one hospitalization (that in my opinion wasn't needed, especially when they said, "oh, she's never been in for IV, it's time she had a cleanout then") Anyhow. She does her's in the evening too. In the summer or on long school breaks we change it to the AM because she gets so pre-occupied with other things in the evening that she gets too tired and then falls asleep while doing her treatment. Changing it during long breaks (spring break, Christmas break, and summer break) they have said is OK. Check with your clinic though and see what they say. This is just what we were told in the begining oh so long ago, and no one (we've been to a few different clinics due to moving around with the USAF) has ever said, "oh, don't be changing it around". I tell them flat out when we've changed from pm to am. When we do change it though I usually have her do it a few hours earlier, like usually she does her treatment at around 8pm, I'll have her do it like at 6pm then the next morning she doesn't do her Pulmo. until like 10 or 11am. She's lazy during breaks anyway so any earlier would be impossible. You may find that you like doing in the evening better. For us, it's more relaxing, no rushing to get things done. Hope this helps, I know I went into more detail than what you were probably looking for, sorry. Liza
 

anonymous

New member
the important thing w/ pulmozyme is that you give it time to WORK. I've been on it since I was 13 (maybe earlier, I can't remember) and I have moved it around a lot. I like mornings b/c then I'm cleaned out for the day, and nights are great b/c I sleep better. But you have to wait about 30 mins. after doing it to begin airway clearance to get the full benifit, and it's best to do it after albuterol when your air ways are more open, but before TOBI or other inhaled antibiotics so that they can stay in there and work.Debbie22 yr old w/ CF
 

anonymous

New member
My daughter is 19 and has been on pulmozyme since she was 8. She is now in college and doing great. I am a big believer in doing everything and anything to promote a normal life. Mornings used to be impossible. Her doctor at the time said she could do pulmozyme at night. For years, she kept a nebulizer by her bed- did her treatment right before she went to sleep and either read, watched tv or studied during pulmozyme. About a year or so ago, she switched to doing pulmozyme while using the vest. We had the vest in the den next to the computer and that was great too. She lives in a dorm now and takes care of her own health.
 

anonymous

New member
Sorry to get off topic, but I had a question for the last person who posted. I was wondering if your daughter uses this site too because I am also 19 and living in a dorm (second year in dorm) and thought it would be cool to talk to another CF in the same situation. Anyway if she is on this site or would be willing to talk with me some time let me know. ThanksEmily 19/CF
 
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