Kuvan Responder Trial Delayed

hectic overwhelmingLet’s be honest, life can be hectic. I regularly put in 40+ hours per week, I’m pursuing my master’s in public relations, I try to make it to the gym every now and again, and tonight, I just finished vacuuming my condo from head to toe so that I can finally reclaim my house from all the hair that my two cats have left behind. Let’s not forget the laundry, grocery shopping, and the occasional wedding or baby shower. Honestly, it sometimes feels like I barely have time to hang out with my husband.

What I’m trying to get at here is that last week, when I was supposed to begin my Kuvan responder trial, I started to feel a little overwhelmed. The thought of having to record every single thing I’m going to consume for the next three weeks does not appeal to me in the least. In addition to recording all foods, I also need to make sure that the amount of protein I consume one day does not vary drastically from the next. This takes some thought, some foresight and a whole lot of preparation. What’s more, because I’m currently off-diet, a lot of the foods I regularly eat, which are high in protein, are not included in the wonderful food lists, cook books, and software applications that are specially created for a low-protein diet.

To the rest of the PKU community, all this recording, measuring and weighing doesn’t sound that abnormal; however, with my life unfolding at break-neck speeds, I venture to guess that my non-PKU friends and family are wondering how I’ll even find the time to add this to my plate. The simple answer is you have to make it work, and, eventually, I will. Yet, for now I think there is some value in acknowledging the frustrations and hesitancy I have in getting started on the responder trial. Perhaps there are other off-diet adults considering Kuvan who can benefit from my ramblings, or maybe writing about the experience will turn out to be cathartic. Nonetheless, I intend to work through it and find some ways to make it more manageable.

USDA logoOne such way is that I believe it would be helpful to have access to equivalency data for foods that are high in protein. What I mean by that is this: where can I find information that tells me that the protein found in 4 ounces of chicken is equal to X-ounces of ground beef? I spoke with my clinic about my questions and I was directed to the U.S. Department of Agriculture’s (USDA) National Nutrient Database. Unfortunately, I found the site cumbersome to use, so I continued to conduct some online research. I eventually came upon a meat and protein chart maintained by Dr. J. D. Decuypere, a chiropractic physician with a nutrition background. According to her site, the doctor uses the same data provided by the USDA, but in my opinion, displays it in a more user-friendly format. My clinic also said that in general, 1 oz of meat is equal to 7 g of protein.

Hopefully, this information will help me feel more confident in tackling a responder trial. I’ll certainly continue to keep you posted. For those other off-diet PKU patients out there who took the Kuvan trial, how did you manage the process?  Did you figure out any tricks for making it easier? Share your thoughts in the comment field below. I’d love to hear from you!



Filed under Kuvan

3 responses to “Kuvan Responder Trial Delayed

  1. Wendy West

    Nicole, I think you’re a very brave lady. As your supervisor, I’ll help with the 40+ at work any way I can. Lean on your friends. We’re here for you. Praying it will go well for you…

  2. Thanks, Wendy ! A strong support system means everything. I’m fortunate to work with you and a great bunch of people!

  3. Pingback: Today’s the day – Kuvan Responder Trial Begins! | PKU Parlor

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