Tis The Season

As we all know, it is flu season. We are all aware of the extra precautions to take in order to stay away from the tissues, cough medicine and all that yucky stuff. Well, normally, you would just wash your hands a lot more than normal and take extra vitamin C. It's a little more complicated for someone with PKU.

It's much harder to stay feeling healthy when you have PKU. Not only do you have to wash your hands regularly and take vitamin C, but you also have to take zinc. Protein has zinc (of course) and that's what helps your immune system stay healthy. You also have to make sure to eat right and follow the diet as closely as possible to make sure you are feeling healthy to begin with. If you aren't feeling well in the first place due to high protein levels, then the flu will knock you out.

I already had the flu this year and it was not fun. I had a flu shot, so luckily I didn't get it as bad as I could have. Like I have mentioned before, I have not been following the low protein diet closely in just over 4 years. So, I was hit hard with the flu this year. I am so glad I had gotten the flu shot, or I would have been in trouble.

It sounds really easy to stay on top of PKU. But there are a lot of things that you have to do and it takes a lot of money. The medication I mentioned in my last post, Kuvan, on average it costs $57,000 a year and for the maximum dose, $200,000 a year. You also have to take into consideration the traveling costs to see all your doctors. In my case, I have to drive 4 hours or 220 miles.

Not only is it the medications and the formulas expensive, but you have to think of the grocery bill. Someone with PKU eats very often. We can't have much protein, and protein is what makes someone feel full and stay full. Someone with PKU eats more often and more because we never actually feel full. So, it's only reasonable you have to buy more food. Well, that adds up.

Anyways, stay healthy everyone!!

Until next time,
Phe

A New Medication!

There is a medication for everything now days. All you have to do is go to your doctor and tell him or her what your symptoms. Well until now, I couldn't do that with my PKU. I was doing a little research and I found there is a medication to help make my life a little easier.

I was looking for a topic to write about tonight when I stumbled across a page that talked about a prescription. It's a medicine called, KUVAN. It acts with an enzyme in your body to reduce blood Phe levels. It would in a sense take the place of formula, but in a different way. Formula gives me the protein I need when it's already broken down. This medication would make it so I didn't need my formula. It would break down the protein for me.

I just found out about this medication threw my research. I haven't seen my doctor (for PKU) in almost 4 years. Guess it's time to make an appointment!! I will let you know how it goes!!

Until next time,
Phe

Something Fast...

It's been a rough few months for my husband and me. We moved 165 miles away from where we were living with less than a weeks notice. My husband's job went south (they wanted us to move over 1000 miles away than where we were with 2 weeks notice or find a different job). So, we found a different job. With moving with such short notice we didn't have a place to stay. My grandparents generously offered their travel trailer for us to stay in until we found a place.

It's not so easy to cook in a travel trailer, as you can imagine. So, we have been improvising. We both work and have to take lunches to work. It only takes a little while to get sick of sandwiches. So we started buying frozen meals, like TV dinners. Have you ever looked to see how much protein is in some of those??? I never thought to look (that was dumb of me).

I started not to feel so good and I couldn't figure it out. I was going grocery shopping when I decided to look at the protein content in everything. Well, most of the things I was buying had about just as much protein as I thought... that was until I got into the frozen food section.

Marie Callender's
Smokey Cheddar Mac                                15grams
Stuffed Pasta Medley                                  21 grams
Fettuccine Alfredo with Garlic Bread           24 grams
Pasta Al Dente Rigatoni Marinara Classico  19 grams 




I mean it makes sense why there is so much protein. It is a MEAL! I guess I didn't think about it. There aren't many frozen meals that people with PKU can have (without meat). But I guess, there is no such thing as a "fast meal."

Until next time,
Phe

It's Been Awhile!

Man, it seems like it has been forever since I have posted. I have been quite the busy bee lately. I got a new job that has kept me busy, plus looking for a new place, and of course taking care of my husband and the dog. It sure doesn't seem like much in comparison to the things some of you have to do on a daily basis, but it's a lot for me. Especially, since I went from taking care of the dog and my husband and nothing else.

Well, now that Thanksgiving has come and gone I want to share some of the things that I am thankful for this year. First of all, I am thankful for my wonderful husband who works so hard to take care of me and make sure I am happy and comfortable. Of course, I am thankful for all of my family. They are all so wonderful.

I am, also, thankful for my church and salvation. I don't know about everyone who reads this, but I know I wouldn't be here today if it weren't for God's grace and mercy. I am thankful for the country I live in. It has the technology to detect and diagnose things like PKU that can be treated. I am thankful for so much more, but I don't want to take the time and list them all.

I hope you all had a wonderful Thanksgiving and are looking forward to Christmas as much as I am. Only 21 short days until Christmas.

Until next time,
Phe

Turkey Day!!

Thanksgiving is upon us. What is the first thing you think about when you year Thanksgiving Day? Some think Football, some think family. The most common response to that question is Turkey. Have you ever thought about having Thanksgiving dinner without turkey?

For people with PKU, it's a common thought. They hear Thanksgiving and the first thing they think of is NOT turkey. I think of the Macy's Thanksgiving Day Parade. Honestly, Thanksgiving dinner is just the same as any dinner, except there is more family around to share it with.

At my family dinner there is turkey, ham (sometimes), mashed potatoes, stuffing, green bean casserole, cranberry sauce, gravy, and an assortments of pies. So, of course no one goes hungry, but no turkey. Try having one plate at Thanksgiving dinner with no meat.

Until next time,
Phe

Low Protein Diet

Some people say the Low Protein Diet, for people with PKU, is a life long diet. The doctors and nutritionists recommend it as a life long diet as well. But is it really that important?? What would happen if someone with PKU went off the diet??

As a child, I grew up thinking that every kid my age were lucky to not have to drink the protein formula that I did. I wasn't envious by any means, but I did look forward to the day that I didn't have to drink it everyday. I mentioned it to one of my nutritionists at one of my appointments, and that was when the speech started. "Diet For Life!!"

Well in the past few years, I have not listened as well as I should have. I hate to admit that I am wrong, but.... I am. I had no idea of the problem that it could cause! I started developing a rash on my arms and neck. It wasn't until recently that I found out that high protein levels can cause eczema.

I, also, found that if someone with PKU were to have been off the diet for awhile, they could experience some hair loss. Nothing extreme, but hair would still be falling out, more than the normal shedding. I haven't experienced this one, if I have I didn't notice.

Some people have a hard time controlling emotions. Something that would normally be annoying could make someone with PKU want to scream in anger. I have noticed some irregular emotions, but nothing close to screaming in anger.

I'm sure there are a lot of other things that are caused by a high level of protein in the blood stream, but this is all I know of at the time. I will keep looking and post if I find any others.

That being said, I have to agree with the doctors and nutritionists. DIET FOR LIFE

Until next time,
Phe

There is a Time for Change

I have been telling you a lot of things about PKU lately. Basically, I am just informing you and not talking about the daily struggles. That is going to change a little bit. This blog is not only to inform and make you aware of PKU, but it is also to help those who have loved ones with it as well.

Having PKU is difficult, but not as difficult as living with someone with PKU. Going grocery shopping for a household that includes someone with PKU is hard when you yourself don't have PKU. You have to think about what is healthy, what everyone likes, and how much protein is in the food you are buying. You have to stay aware of how much food you are purchasing that the one with PKU can actually eat.

The "normal" person making a meal for the household needs to think the same way when cooking. "How much protein is in this?" "How much food did I make that _____ can eat?" It's not easy.

Now I wanted to start doing something new. I have been trying to keep count of my protein intake lately. I'm not doing very well by myself. So, I am going to start putting the amount of protein I ate/drank the day before I write a new blog.

Thank you for everyone reading. Today's blog has been a little scatter-brained.

Until next time,
Phe

Intake: 16 grams