Saturday, March 2, 2013

AREST CF

I had another 'psychological study' last week as part of the AREST CF program. AREST CF represents Australian Respiratory Early Surveillance Team for Cystic Fibrosis. It's a program only being used in Perth and Melbourne so far, but we have hopes of expanding it to include all of Australia and then internationally.

It's because of our involvement with AREST CF that Victor has had chest CT scan, bronchoscopies and lung function tests. Yes, some of these are invasive procedures and because of his age, must all be done under sedation or anesthetic. That carries risk. But, ultimately, I believe it's worth it. 

Using these tools, his doctors can discover early changes to the structure of the lung, early areas of damage occuring, and can accurately test for any infections that may be starting to colonize his lungs before symptoms appear. Catching these things early means we have a much better chance of eradicating the germs or preventing further damage.

The researcher came to my house around noon, and we sat in the kitchen while the boys had their lunch and she recorded our conversation. She asked me a lot about how I felt in the days leading up to the procedures, and how I felt while they were happening. It happened over five months ago so my memory of it is starting to fade, but I do remember feeling anxious in the lead up and while it was happening. I think it would be impossible not to feel anxious: your child is being put under anesthetic and they are having cameras and tubes inserted into their lungs. Plus the results could come back and say that they have a nasty disease sprouting in the lungs or damage occurring.

I told her that while Victor was having his CT scan and bronchoscopy a researcher spoke to us about the study and that kept me occupied for pretty much the entire time he was away from me. I don't think it was intended that way, but it worked out really well. 

I also told her that the procedure was similar to vaccination. You don't want to hurt your child with a needle, and you know they will probably get a fever afterwards and not feel all that great, but the end result is worth it. I think it's the same with the AREST CF program: you don't want your child to have to undergo this procedure, but the result is so worth it.

The researcher told me that some parents don't want to know if their child has damage to their lungs or is picking up an infection. To each their own, but this does seem slightly crazy to me. I get it: sometimes I wish that if I could just bury my head in the sand, all my problems would go away and fix themselves, but unfortunately this is real life and that doesn't happen. I think it's far better to get a good look, find out exactly what is going on, catch any changes early and remedy the problem while it's still just a small problem. Catch the disease before it starts destroying your child's lungs.

The point of all these questions was so they could inform prospective parents exactly what it's like, from a parent's perspective. They have seen such good results with this program that they want to get as many young CF patients on it as possible. 

We will have another procedure like this one coming up when Victor is around a year old. I wrote about his previous results, which were excellent: his lungs are perfect and healthy, exactly what I was hoping to hear. If the results this time aren't so great, then at least we will be in the best place to treat him and we will be able to start battling those germs before they even start causing symptoms. If you are wondering whether to start this program with your child, the answer is YES! I hope to see AREST CF spread all over the world because all children with CF need access to this wonderful program.

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