#pulmozyme

Robyn has been using the I-neb for about 6 years now to neb various medicines including Pulmozyme, Tobi & Promixin. One of the features of the I-neb is that the hospital could download data from it to monitor the treatments to make sure the correct dosage is being administered, but they could only do this when you attended clinic in Sheffield, which for us is probably only 1 or 2 times a year.

Phillips Respironics have now developed the software to allow the patient to download the data to your own laptop and then upload that data to a website that the hospital and themselves can access. You can do this as often as you like, we will probably do it every 2 weeks. I guess during times that PFT's are down they will probably want the data more regularly. 

The above photo is of the treatment view tab and shows I-neb use, nebulization time and daily nebulizations both in graph form and also as a %. So no way of hiding missed treatments from your CF team!

This second photo is of the Devices View tab. In this view it basically shows mesh performance, Inhalation time and rest time. Philips monitor the mesh performance and can see when and if the mesh needs changing which is good especially with using Tobi through the neb that is sticky. The other 2 graphs that show Inhalation and rest times can help highlight potential oncoming infections, i.e. If the Inhalation time comes down and the rest time goes up.

Even after nearly 20 years of living with CF in our lives I still can't help but feel totally helpless and useless sometimes when one of the girls is not feeling very well, the past couple of days both of them haven't been at their best so this has only served to multiply these feelings. It's like the bad dream you have when you are running to help someone but you don't go anywhere, you just stay where you are Running on the Spot! 

Lauren started complaining of a small headache on Thursday night that seemed to still be there on Friday morning. After a big coughing fit, physio, more coughing, treatments, more coughing and a little bit more physio she looked absolutely knackered but she assured me & Jo that she was ok to still go on her driving lesson. When she returned from the lesson she said she was starting to feel a little better and would be alright to come into town with us, I think it was because Dad was buying drinks and cake that helped her feel better.

We left Lauren in town with Beth and went to pick Robyn up from school, by the time they came home the headache and coughing were back stronger than ever and to top it all off Robyn had started with a sore throat. I was keeping my fingers crossed that we didn't get any blood streaks every time a cough came on. For the rest of the evening Lauren just became so lifeless laying there on the sofa, she was even talking about cancelling her night out on Saturday which isn't like her at all. CF had reared his ugly head again from where he was hiding and was giving us a good working over.

Well CF I'm afraid you'll have to get up pretty early to defeat us Setterfields! FUCF!