Friday, October 17, 2014

Off topic post: My PKU journey

Hey guys, sorry I didn't do a regular nail post today. Thought it might be an appropriate time to share with you this journey I'm headed down health wise.

I wrote several portions of this post in a post last year, but that was before I met all you fun nail gals. Thought it was time to share some of this with you.

Well I was born with a metabolic called PKU. What is PKU? It is actually short for phenylketonuria (which to this day I still have to look up the spelling for) and in plain English it means I can't have a diet high in protein. I have had it since I was born and every newborn is tested for it when they get their heel prick (which tests for more than 240 metabolic disorders).

Basically the science behind it is that protein is made of 20 amino acids my body cannot break down the amino acid phenylalanine (PHE). What does that mean? If I eat a hamburger will I start seizing on the floor, no. The effects of PKU are a long-term pain in the butt.

Maintaining a strict diet was extremely important when I was growing up and my brain was developing. See, having high PHE levels in my blood levels affects my brain functioning. If I was not treated from birth, I'd be severely mentally retarded today. So thank you science, for figuring this out before I was born so I can function normally from day to day.

This graphic courtesy of shows it in very simplistic terms.

Wait a second, you need protein to survive right?! Yes, you do. I get my protein the form of 60 pills a day. Pills that contain the other 19 amino acids my diet lacks. You think 60 pills is bad? When I was growing up I had to drink a formula that was so bad I had to drink it in a thermos with a straw through high school because I would gag at the smell of it.

This is what 20 pills looks like, I do this three times a day.
Eating while having PKU is an exercise in math, making sure you understand the quantities of PHE per item you are about to put in your mouth. Growing up everything was based on  a point system, very similar to Weight Watchers. When I was growing up I was allowed 22 points a day. A banana is 3 points. A large french fry from McDonalds is 13 points. So all real world food (except sugary candy) pretty much has some sort of points attached to it. You literally have to think about everything you put in your mouth and you have to keep track of what you eat.

Now mind you, I had my time off diet. From about college through about the last two years, I had my fun, eating whatever I wanted. Not taking my formula and just rebelling and enjoying food. 

So why am I sharing this? Well my husband and I have decided it's time to try and have children. Having children with PKU is a whole new journey in self discipline. My diet now is even stricter than it was when I was growing up. I was allowed 22 points then, now I'm allowed all of 10. 

In order to reach such a low food target, I have been eating a lot of low protein foods. Low protein foods are engineered without the amino acid I can't have, and try their best to be similar to the real world equivalent. I eat a lot of low protein pasta and rice. 

I also have to track what I am eating and measure every grain of food I eat. I use the measuring scale daily! I've had to replace normal foods I used to eat like potato chips, with their low protein equivalent like taro chips instead. I have to account daily for the amount of food I eat, the amount of PHE each item has and how many calories are in each item. Here is an idea of what that looks like:

Rice Chex3/4 cup/ 20g6774
five sugar cubes (with tea)five cubes075
Cherry Dr. Pepper1 can0160
Taro chips37g30212
2 low pro cookies2 squares0216
Lo Profin Macaroni97g12352
Fresh Mushroom Prego81g3544

I have to take my blood level weekly, just in preparation of having a kid, to make sure I make my body baby-ready. I started this strict pre-conception diet as soon as I got back from Europe at the end of August. My blood levels have been steady where my doctors would like them, so hopefully we can get the green light from the doctor to start trying to have a child in January. 

Anyway, so when I say life is busy, I don't just mean with work. I mean with juggling with preparation for having a child, my diet, health and stuff in general. Basically I just wanted to bare a little of my soul with you all so you could all get to know me just a little better. If you made it this far, thanks for reading!!!

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