Kuvan Meeting

Hello Readers!

Well I just got done with the meeting I had about my Kuvan Trial. I can't tell you how excited I am to start this. I am sitting at home waiting for my package from FedEx to arrive that contains my months supply of Kuvan.

As you may know, the Kuvan Trial is free for one month. Well during the first month one of the reps/ case managers from Biomarin (the company that makes Kuvan) will be working with my insurance to figure out how much they will cover. As of right now, I am not too worried about how much my insurance will cover. Right now, I am more worried about is if I will be a responder or not. But the company will be working on the insurance just in case I am a responder. That way I won't have a lapse in treatment (hopefully).

While Karen, the dietitian from Biomarin, was here she gave me the details of what this trial will include. It won't be as hard as I once thought. (Thank Goodness!) I was under the impression that I was to take my 18 pills a day first thing in the morning. Karen, however, told me that it is best to take them with the larger meal. So, since I don't really eat breakfast, the morning is not the best time for me to take them. But instead, take them with dinner.

Another thing that she cleared up for me, I thought I had to eat the same exact things everyday during the trial. That is not so, I can vary in the foods that I eat as long as I stay within the same range of protein a day. I was very happy to hear that. Also, she told me that I could either swallow the pills or dissolve them in a drink.

I also, got quite a few little gifts. She gave me a pill crusher, a food journal, a pill holder, a ton of pamphlets, lancets to test with, and a lancet disposal jar. Many more I am sure, I just can't recall them all.

AND, I came home last night to find a big box of medical foods on my doorstep that I didn't know was coming. So that was a nice surprise.

Well, that all I have for now. If you have any questions or comments you can comment below, or you can contact me on Facebook at the link below.

Until next time,
Phe

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Update

Hello, Everyone!

The date is set. I am meeting with the Biomarin representative next week! She will be bringing the months supply of Kuvan. The trial is set to start on Thursday, I believe. I am a bit nervous but mostly excited to start the trial.
I am hoping this Kuvan brings down my levels, dramatically. I am hoping that this allows a lot more freedom with my diet. (It probably won't be that simple, but a girl can dream). Anyways, I just wanted to let you all know that the date is set.

Until next time,
Phe