Thursday, March 12, 2009

My Cystic Fibrosis

My genotype is Double Delta F508


My Medications


My Supplements


My Pulmonary Function Test History


My Equipment




Pontificated by Unknown
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Anna's avatar

Anna · 780 weeks ago

I have a question - my son is doing some breathing treatments - first albuterol, then pulmozyne, then tobi. Our nebulizer is inconsistent in the times it takes each day. sometimes it takes 10 minutes to do tobi, sometimes it takes 30... i am wondering if i have a bad nebulizer or if that's just how it is. He is only 2 so this is the only nebulizer we have ever had. Thanks!
1 reply · active 780 weeks ago
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RunSickboyRun 96p · 780 weeks ago

Are you sterilizing the nebs in between each use? That can effect the treatment time as well. Otherwise, just make sure you are cleaning the filter regularly and replacing when necessary. What kind of compressor do you have?
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Anna's avatar

Anna · 780 weeks ago

I have just been sterilizing every few days. I will start doing it more frequently. I have a Pro Neb Ultra II. Do you sterilize in the microwave or on the stove top? I have been doing a bleach/water combo thing because I was worried I would warp the stuff in boiling water? Thank you!!
1 reply · active 780 weeks ago
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RunSickboyRun 96p · 780 weeks ago

It will DEFINITELY help if you sterilize them more often. I would recommend the Phillips Avent baby bottle sterilizer. All it takes is the push of a button and 30 minutes later your neb cups are clean. If not, putting them in boiling water shouldn't hurt them, that's what I used to do :)
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rburkhalter 18p · 759 weeks ago

I had thought I was well in the loop with J's care and knowledge of CF until I found your site and then Fatboy's from yours. I just found out J's gene type on Monday since he had clinic. He is also a double delta f508.
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Roxane 's avatar

Roxane · 757 weeks ago

I have a 24yr old stepson who has been in hospital since firsdt of Oct with double pnuemonia and now we have find out the reason he's not healing is because he has CF. My husband is taking this hard and I don't know where to go or what to do. I try to be supportive and understanding at the same time I'm seeking more info and don't know where to start. Can you help

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