A Day in the Life...

A Day in the Life…

Avatar of Angelica

A Day in the Life…

October 9, 2011 in Uncategorized

A handful of my non-PKU friends have recently been asking “what is a regular day of eating like for you?” and since I was recently asked to be a co-director with Phe-Nap; the PKU Food Bank, “how much do you spend on medication and foods?” “What are your biggest struggles?” “Why is Phe-Nap necessary?” Now some might think these are strange personal-type questions to be asking, but to me it just means they are altogether curious and really interested in how to lend a helping hand so I will oblige the best I can. Beginning with the first question, I must admit, since I have been out of work for about a year now my daily eating/medication routine is well, let’s face it I really don’t have one and that shows. With that said for benefit of reference I will reflect on what was a “normal working day” for me. I had a standard 9-5 type office position with the day to day grind everyone else is used to with the addition of three key factors that were included in my EVERYDAY routine to keep in mind as you read:     I MUST take my Kuvan daily.     I MUST drink my formula daily             Currently prescribed Phenylade 60 in the protein equivalent of 50 grams per day (important to know for later)             I can ONLY consume approximately 10-15 grams of food protein per day.             FYI – a simple plain cheeseburger from Mickey D’s is about 15 grams of protein and if you add a small fry that’s an additional 3 grams. So a quick drive-thru lunch for a non-PKUer wipes out my whole food protein intake for one day and then some.         Before Work: I would wake up every morning before work, just like everyone else in the world. I put my pants on one leg at a time. Then I would mix an iced coffee/non-dairy creamer type latte drink with 1 scoop of my formula because formula’s MUST be kept cold. There’s 10 grams of formula protein. I usually would not eat breakfast. I know, I know, bad Angie, breakfast is the most important meal of the day…yada, yada. Break 1 (AM): Usually take my Kuvan for the day (18 tablets) Warning!! Please Note: that if just 1 tablet doesn’t go down right and sticks in your throat it burns like a mother. Then I would eat an apple or some sort of fruit, fruit for the most part is free of protein, so it’s ALWAYS a safe snack. Last I would mix 2 more scoops of formula (20 grams) into my “Iced PKU Latte.” Lunch: Finally some real food, right??? WRONG!!! Or I guess it depends on what you consider “real food.” I would, most times, make myself a house salad, avoiding eggs, meat, sunflower seed, and other high-protein toppers and ending with a regular Italian dressing or just oil and vinegar. That meal there contains about 4 to 6 grams of food protein. Break 2 (PM): You guessed it…more of my “Iced PKU Latte” with 2 more scoops of formula (20 grams) bringing an end to my intake of formula protein for the day. Then maybe more fruit if I was hungry. Dinner: Note: I only have around 5 to 10 grams of food protein left I can eat for the day. So, usually something like a couple of cups of spaghetti with a tomato sauce with no added frills. Please understand this an EXTREMELY good day, they are few and far between, life happens. It takes ALOT of restraint on my part for this to happen which does not come easy especially when you’ve been off diet for 10-20 years. I’m like a “high-protein junkie” and yes when I’ve need to really drop my phe levels I have put myself through “protein detox.” I didn’t mention any beverages because for the most part unless they are diet or lite beverages are usually free of protein kinda like fruit. Now, some of you younger PKU families are now asking yourself “why are you not using low protein foods to supplement your eating??” Easy, peasy and that delves into the next point of inquiry “how much do you spend on medication and foods?” “What are your biggest struggles?” “Why is Phe-Nap necessary?” I AM A PKU ADULT; I have bills to pay (cost of regular day to day living), and a kid and family to help support, that *STUFF* cost ALOT of money, especially when you are not allotted an allowance by your state or insurance or any kind of reimbursement. Non-PKUer Reference Point: 1 1lb package “lo-pro” cheese raviolis $17.49 1 pack 16 count “lo-pro” hotdogs $24.49 (I use the term hotdog loosely here) 1 pack 17oz “lo-pro” spaghetti $10.59 With all that being said, please, also, note: I do not have health insurance so I cannot ALWAYS get my hands on my “prescribed” formula so for the most part I make adjustments to my diet accordingly (which means accordng to which formula I can get my hands on). My prescribed formula is actually one of the lowest costing on the market, I think, compared to some formula expenses I’ve heard at about $90.00 a four can case this makes my out-of-pocket formula, just formula mind you, expense about $500.00 a month roughly and I do not qualify for any state assistance at this time to defer any costs of this. Oh wait!! It gets better. My Kuvan (my god sent wonder drug) costs about $86.00 per pill, I take 18 a day and this is the low end of what I’ve heard it costs per pill. That makes approximately $46, 440 per month for my Kuvan. So that makes almost $47,000 per month for my needed medications, which does not include out-of-pocket cost for doctors visits and lab work, so you can see why I cannot afford any of the low protein foods. So on a personal note: FYI hint, hint, hint for Christmas or my birthday gift certificates for low protein foods, which they do have, or money for my medications expense fund is highly welcomed and appreciated. You can also see why my fundraising for Phe-Nap is so important so that we can continue helping PKUers that cannot afford treatment or get any other assistance. Please look into this event for next year to help either to attend, you don't need to be a PKUer, or to sponsor/donate to. 2nd Annual Phe-Nap PKU Food Bank Fundraiser 3 Day Event! April 27-29th 2012 alt http://www.facebook.com/#!/event.php?eid=270569699643163 If you cannot help here and still would like information on how you can help let me know.

3 Reviews of A Day in the Life…

  1. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    My two sisters are only allowed 6 grams of protein a day. They don’t eat low protein foods either, with the exception of pasta that we get through our clinic and bread that my parents purchase from a local grocery store. For us it isn’t a cost issue, because Wisconsin provides certain staple foods free of charge. However, we like to focus on fruits, vegetables, and other foods naturally low in protein so that if we (meaning me and my sisters) ever decided to move to a state where low protein foods are not provided we would know how to manage without. Plus my personal thinking is that naturally low phe foods are probably healthier than low protein foods anyway lol.

    In addition to the bread that my parents buy we’ve also found cheese, yogurt, ice cream, ice cream bars, coconut milk (in both jugs and individual servings), pretzels, cookies, and a ton of other foods that our low in protein at local grocery stores. Yes, they are a bit more expensive in comparison to their high protein counterparts, but definitely good to have once in awhile as a ‘treat’. It just takes a little bit of hunting to find these foods in stores.

    ANYWAY, that got longer than I thought it would. Sorry about that :). It sounds like you’re doing awesome though despite not having low protein foods available. Good luck with the fundraiser!

  2. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    Hi Angie,
    I’m allowed 7 grams of protein per day, and Kuvan didn’t work for me. I also drink Bettermilk, which is 2 grams of protein right there. Thankfully, the state of IL pays for my formula. I agree with Brea, you can find cheaper options in grocery stores to most things except the Cambrooke breads (which I do think are the best option for bringing a sandwich to work). I buy SandwichMate cheese, which is only 99 cents for 16 slices and has only 24 mg phe. I buy bean thread noodles or spaghetti squash from time to time. Trader Joe’s has 99 cent noodle bowls that are 2 grams of protein. Buying baking mix and mixquick also save $$ in the long run. It’s more cost effective to bake than buy the pre-baked goods, although I know it can be time consuming. But hey — I’m a pretty good cook now!
    Anyway, I still think the food bank is an awesome idea! On 5 gms of protein from food per day lo pro foods are not an option!
    By the way, I don’t eat breakfast anymore either. I’ve been trying to lose weight, and realized that the 140 calories + 15gm of protein I drink first thing in the morning are probably sufficient to keep me going. I usually have the 2nd glass between 10am and 11am. I think our nutrition + calorie requirements from food are definitely different than the rest of the world.

  3. Registered: Jul 16, 2009

    Posts: 0

    Kansas City, Kansas

    There aren’t alot of lo-pro foods available here in markets and those that have them charge an arm & leg too. Matter of fact a few months ago for about 2 months the milk substiute was taken out of stores here because they don’t sell enough to keep stocking but they started stocking a nice 2nd choice. Mainly this was to help others to understand the costs and such. I do pretty good with no lo-pro foods they would be a nice option though. Thanks for commenting though my non-pku friends like to read comments from other PKUers and how they live day to day.

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