I've spent the past few days on the phone, with I can't tell you how many different people, trying to get all of the drugs we need. Insurance doesn't want to cover some of them, and others are only available to us through mail order at this point. I'll fight the good fight with these people and get what we need. Its just been on my mind so I thought I'd share.
Thursday, July 22, 2010
Drew takes over 300 pills a month. Thats of 1 medication - Creon. We will go through 150ml of Prevacid, 90 vials of Albuterol, 30 vials of Pulmozyme, 30ml of Vitamax, 6ml of Iron, and 150ml of Sodium in the next 30 days. We have also been on 2 different antibiotics, steroids, and inhaled saline in the past 3 months. And it doesn't look like its going to get any better. I know he needs all of these, but its still a little scary to think of someone so little being on so much medicine.
I wish he didn't need any of this. There is some hope with 2 new drugs and a gene therapy currently in the pipeline with the CFF. I think I wrote about this before, but I'll talk about it again. Here's a little bit of info from the CFF website on these two promising treatments.