A handful of my non-PKU friends have recently been asking â€œwhat 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 itâ’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’s 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 according 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.