Well hello, again, everyone! I know I promised to update you all on my last appointment, but since then I have not had access to the Internet. For that I am sorry. I have noticed a steady amount of page views everyday since my last post, and I am guessing that some of you are interested in how it went..... so here goes.
When I went up to my appointment ( I say went up because it is a 4 1/2 hour drive north) they had scheduled me for both a physical with the nurse practitioner and a regular appointment with my metabolic specialist. My physical went great, good blood pressure and everything. Of course they did blood work to test all my levels, but we will talk about that a little later.
In my appointment with the Metabolic Specialist we talked about Kuvan. She agreed that I am a good candidate for it. She had me fill out all the paperwork for a trial. We discussed my insurance because she was concerned about the copayment. I had no idea how outrageous the price of Kuvan was.
Kuvan is $37.00 per pill. That would already be expensive if I only had to take one a day... But I would have to take 18 pills a day!! That is $666.00 per day for me to take this medication!! Now if that isn't crazy I don't know what is.
Like I mentioned before, I filled out the paperwork for a trial of Kuvan. In studies they have done, the results show that not all candidates are responsive to the medication. They can't even say that a certain mutation of PKU will respond. Therefore the 4 week trial is how they determine whether or not you respond.
I got a call the other day from a representative of Biomarin (the company that makes Kuvan) to set up my free trial. They are so efficient that they want to send the representative (I cannot remember her name) up to see me before my trail. She is going to hand deliver the medication to me and help me set up a routine to take the medication and regulate everything else PKU related.
My husband and I have talked about it and we think it works best for us that I start this trial of Kuvan at the beginning of the year. I will keep you all informed when it gets closer.
Until Next Time,
Phe
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Friday, November 16, 2012
Sunday, October 21, 2012
Losing Weight
Hello, readers! Once again it has been far too long since I have written. Since we last chatted I have started a new job and have been getting ready to move. My new job has kept me pretty busy with learning the tasks I am responsible for, as well as working the hours that are given to me. I must say I love my new job more than any other job I have ever had. That's besides the point though. I haven't been too busy with getting ready to move until the last few weeks. Anyways, I digress...
Lately, I have been thinking about weight loss and being healthy. I have been trying to lose weight lately. I haven't been comfortable with the way I look or feel for a long time now, so it is about time I do something about that. I never expected to feel the way I do now.
Having PKU and trying to lose weight is surprisingly easy and hard at the same time. Of course, having PKU, you have to cut out high protein foods. Then, trying to lose weight, you have to cut out high fats and carbohydrates. So basically, what I have been doing is drinking my formula and eating fruits and veggies. I haven't been too worried with cutting out bread because as of lately, I haven't been eating too much of it. I realized that is where a lot of my protein was coming from. I want to try to make low protein bread, but I just haven't gotten the mix for it yet.
On another note, I am scheduled to go see my Metabolic Specialist on the 30th. I am hoping that this appointment is the one where she puts me on Kuvan to try it out. I will update you all after the appointment.
Basic Bread Recipe
Makes 12 servings
Protein 0.26 g
Phe: 10 mg
Anyways, that is all I have for now.
Until next time,
Phe
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Lately, I have been thinking about weight loss and being healthy. I have been trying to lose weight lately. I haven't been comfortable with the way I look or feel for a long time now, so it is about time I do something about that. I never expected to feel the way I do now.
Having PKU and trying to lose weight is surprisingly easy and hard at the same time. Of course, having PKU, you have to cut out high protein foods. Then, trying to lose weight, you have to cut out high fats and carbohydrates. So basically, what I have been doing is drinking my formula and eating fruits and veggies. I haven't been too worried with cutting out bread because as of lately, I haven't been eating too much of it. I realized that is where a lot of my protein was coming from. I want to try to make low protein bread, but I just haven't gotten the mix for it yet.
On another note, I am scheduled to go see my Metabolic Specialist on the 30th. I am hoping that this appointment is the one where she puts me on Kuvan to try it out. I will update you all after the appointment.
Basic Bread Recipe
Makes 12 servings
- 1 box (500 g) Loprofin Mix
- 1 sachet dried yeast (supplied with mix)
- 2 tbsp vegetable oil
- 425 mL (about 14.5 fl oz) room temperature water
- 1 x (2 lb) bread loaf pan + 1 x (1 lb) loaf tin OR 3 x (1 lb) loaf tins
- Optional Flavors to be added at Step 4:
- Sweet breads: 250 g (8.5 oz) dried fruit of your choice, 2 tsp sweet spice and/or 2 tbsp molasses.
- Olive and Tomato Bread:1 tsp salt, 3 tbsp olives and tomato
Preparation:
- Preheat the oven to 425°F.
- Mix together the Loprofin Mix and the yeast into a large bowl, stir in the oil and water.
- Beat the mixture for 1 minute, if using an electric hand mixer, or 2–3 minutes if using a wooden spoon, until the batter is smooth and glossy.
- Stir in the flavorings if desired.
- Divide the mixture between the prepared tins, smooth the surface and carefully brush with oil to seal the batter and prevent it drying out whilst rising.
- Loosely cover the pans with cling wrap and put in a warm place to rise. This should take about 30 minutes, until the batter has doubled in size.
- Remove the cling wrap and bake the bread in a preheated oven (425°F) for approximately 25 minutes, until golden brown.
- Cool on a wire rack.
Nutrition Information (per serving):
Calories: 170 Protein 0.26 g
Phe: 10 mg
Anyways, that is all I have for now.
Until next time,
Phe
Don't forget to check out these web pages!!
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Tuesday, August 7, 2012
A Little Look into My Mind Lately
It has been a while since I have updated you all. I'm sorry for that. This last month has been completely CRAZY!! There was a trip to Texas for a wedding, that trip lasted a week. I helped at my church for Vacation Bible School, I went to Teen church camp for a few days, my father's birthday party along with my grandparents anniversary party. Like I said, this has been a very busy month.
Even though this has been a very busy time, I still cannot get baby off my brain. I guess I have come to the point in my life where I think I'm ready. It doesn't matter how much I want to become a mommy right now, I can't because I have to get my diet on track first. I am so close to be getting my levels right!!
I do feel a bit discouraged though. I recently joined a group on Facebook for women with PKU who want to be, who are, and who have been pregnant. I look on the page and I see women who say they are going back on their "precon," or preconception diet. When they say that, they also share their current levels, usually really close to mine. A week or two later, they post saying that their levels have gone down dramatically and are on track to getting pregnant. Me, however, I have been working on my levels since the end of January.
I know it's an ongoing process and it's easier for some people. I just wish it was that easy for me.
Until Next time,
Phe
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Even though this has been a very busy time, I still cannot get baby off my brain. I guess I have come to the point in my life where I think I'm ready. It doesn't matter how much I want to become a mommy right now, I can't because I have to get my diet on track first. I am so close to be getting my levels right!!
I do feel a bit discouraged though. I recently joined a group on Facebook for women with PKU who want to be, who are, and who have been pregnant. I look on the page and I see women who say they are going back on their "precon," or preconception diet. When they say that, they also share their current levels, usually really close to mine. A week or two later, they post saying that their levels have gone down dramatically and are on track to getting pregnant. Me, however, I have been working on my levels since the end of January.
I know it's an ongoing process and it's easier for some people. I just wish it was that easy for me.
Until Next time,
Phe
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Monday, June 25, 2012
Cheating
Have you ever wanted to lose a few pounds? Well, if you have you started a diet. You watch what you eat, count calories, cut out carbs, or something else. It gets stressful and sometimes you want to cheat on your diet. It's normal right?
Everyone on any kind of diet has the temptation to cheat. It's the same situation with someone with PKU. Someone on a regular diet just has to stay on their diet longer, that's the only consequence they get. People on the PKU diet have quite a few consequences, and sometimes we aren't the only ones who get punished.
I can't speak for everyone with PKU when it comes to the symptoms we get. I know when I have had too much protein I dont get any symptoms until the next day. I get VERY moody, I get so tired from doing nothing at all, and I just feel foggy. Like I said, everyone has different symptoms.
Some people get cravings for certain things. I know of someone who craves a Whopper from Burger King. Other people crave peanuts. I know I crave Velveeta Mac & Cheese. Weird huh?
Anyways, that's a ll I have for you now.
Unitl next time,
Phe
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Everyone on any kind of diet has the temptation to cheat. It's the same situation with someone with PKU. Someone on a regular diet just has to stay on their diet longer, that's the only consequence they get. People on the PKU diet have quite a few consequences, and sometimes we aren't the only ones who get punished.
I can't speak for everyone with PKU when it comes to the symptoms we get. I know when I have had too much protein I dont get any symptoms until the next day. I get VERY moody, I get so tired from doing nothing at all, and I just feel foggy. Like I said, everyone has different symptoms.
Some people get cravings for certain things. I know of someone who craves a Whopper from Burger King. Other people crave peanuts. I know I crave Velveeta Mac & Cheese. Weird huh?
Anyways, that's a ll I have for you now.
Unitl next time,
Phe
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Tuesday, June 12, 2012
Only Human
Sometimes in life, people get so determined to do something that when they slip up they are very angry with themselves. It's that way with many to all goals people set for themselves. It's no different for people with PKU.
Just because people with PKU aren't supposed to have a certain type, like bacon, doesn't mean we haven't tried it. Well for some people, it instantly becomes their favorite food. Well, when your favorite food is something you are not supposed to have it makes it harder to stay away from. It's like a dog. Dogs love chocolate, even though they aren't supposed to have it.
Now, I know it is hard to resist high protein foods when they happen to be your favorite. It becomes easier to slip up. We have to realize that we are only human. We will make mistakes, just like everyone else. It's easy to get mad at yourselves for your mistakes, but that isn't going to make them go away. You just have to jump back up and face it again. Everything makes you stronger.
This is mostly to help myself. I have been facing this a lot lately. Not being on the low protein diet made it easy for high protein foods to become my favorite. Because of that I have been finding it hard to stay away from temptations of the high protein foods.
Just remember to stay positive.
Until Next Time,
Phe
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Just because people with PKU aren't supposed to have a certain type, like bacon, doesn't mean we haven't tried it. Well for some people, it instantly becomes their favorite food. Well, when your favorite food is something you are not supposed to have it makes it harder to stay away from. It's like a dog. Dogs love chocolate, even though they aren't supposed to have it.
Now, I know it is hard to resist high protein foods when they happen to be your favorite. It becomes easier to slip up. We have to realize that we are only human. We will make mistakes, just like everyone else. It's easy to get mad at yourselves for your mistakes, but that isn't going to make them go away. You just have to jump back up and face it again. Everything makes you stronger.
This is mostly to help myself. I have been facing this a lot lately. Not being on the low protein diet made it easy for high protein foods to become my favorite. Because of that I have been finding it hard to stay away from temptations of the high protein foods.
Just remember to stay positive.
Until Next Time,
Phe
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Friday, June 1, 2012
Day By Day
I want to thank you all for supporting me, whether it's by following the page and reading my posts, commenting on the Facebook page, or being here for me in my daily life. I have a wonderful support system that includes my family, my friends, my doctors, and many more. I never realized how many people read my blog. I have people at work talking to me about it, my hair dresser, random people adding me on Facebook because they have questions or comments about the blog. It's really nice to see everyone getting something from this page.
Well, make sure the support continues, not just for me, but for anyone else you know who has PKU. There could be things that they are struggling with that they can't explain. PKU doesn't just affect what we can eat, it effects a lot of things in life. Too much protein causes mood changes that we can't explain. I know I have said this before, but I keep saying it because it is important to remember. Sometimes I am extremely grumpy with my husband, he hasn't done anything to upset me. No matter how hard I try, I can't contain it.
It's not only mood changes that PKU effects. There have been many studies to prove that PKU patients with a high protein level have a decreased IQ. This, by no means, means that someone with PKU is "slow" or dumb. It just means that their IQ isn't as high as it could be.
Another thing, something I hadn't shared with anyone until recently. PKU, also, effects the memory. Now, that could mean plenty of things. Some people have a hard time remembering what was said in a conversation the other day, or what they were talking about in the middle of speaking. Others have a hard time remembering a lot bigger things. For example, I don't remember a lot of things from growing up. I can't always bring them to recollection, so if someone is talking about a situation that I don't remember, I just agree with them. I'm too prideful and embarrassed to voice some of my problems. Sometimes it's hard to remember appointments, dates, what day of the week it is. I don't mean just for a moment. I mean it could take a while to remember, some have to look at calenders and planners to make sure.
I know I don't want to be treated differently because of these things, that is why I have never wanted to tell anyone about some of the struggles that comes along with PKU. Through all this, I want people with PKU to know that this is normal, but you should still talk to your doctor about it because it can be helped. I want to make those who know someone with PKU are aware of some of the things we struggle with.
That's all for now.
Until Next Time,
Phe
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Well, make sure the support continues, not just for me, but for anyone else you know who has PKU. There could be things that they are struggling with that they can't explain. PKU doesn't just affect what we can eat, it effects a lot of things in life. Too much protein causes mood changes that we can't explain. I know I have said this before, but I keep saying it because it is important to remember. Sometimes I am extremely grumpy with my husband, he hasn't done anything to upset me. No matter how hard I try, I can't contain it.
It's not only mood changes that PKU effects. There have been many studies to prove that PKU patients with a high protein level have a decreased IQ. This, by no means, means that someone with PKU is "slow" or dumb. It just means that their IQ isn't as high as it could be.
Another thing, something I hadn't shared with anyone until recently. PKU, also, effects the memory. Now, that could mean plenty of things. Some people have a hard time remembering what was said in a conversation the other day, or what they were talking about in the middle of speaking. Others have a hard time remembering a lot bigger things. For example, I don't remember a lot of things from growing up. I can't always bring them to recollection, so if someone is talking about a situation that I don't remember, I just agree with them. I'm too prideful and embarrassed to voice some of my problems. Sometimes it's hard to remember appointments, dates, what day of the week it is. I don't mean just for a moment. I mean it could take a while to remember, some have to look at calenders and planners to make sure.
I know I don't want to be treated differently because of these things, that is why I have never wanted to tell anyone about some of the struggles that comes along with PKU. Through all this, I want people with PKU to know that this is normal, but you should still talk to your doctor about it because it can be helped. I want to make those who know someone with PKU are aware of some of the things we struggle with.
That's all for now.
Until Next Time,
Phe
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Tuesday, May 29, 2012
A Little Update on Me
In some of my posts, I have mentioned that I am trying to go back on the PKU diet. I have been struggling a lot lately, especially with my small amounts of protein and drinking my formula consistently. I have always struggled with keeping my protein levels down, even when I was younger and on the diet. It's no different now.
I recently got a package in the mail, opened it, and discovered my formula! I was really excited to finally have it. I opened it, mixed some up, and drank it. I soon realized the taste had not changed. I can get past a gross taste as long as it doesn't smell gross, too. Thank goodness it smells like real strawberries. :) I still feel sick to my stomach for about 20 minutes after I drink my formula. I am not really sure why that is, but I can live through that as well. The only thing I have really been having trouble with is keeping my natural protein to a minimum. For so long I have had free reign on anything I wanted to eat. I never counted how much protein was in anything... Well, since going back on the diet means limiting my protein, I count it now.
I am only allotted 12 grams of protein a day. That isn't much considering how much protein is in vegetables even.
Potatoes : 2.1 Grams of protein
Broccoli : 4.2 grams
Banana : 1.2 grams
Orange : 1.1 grams
Spinach : 2.8 grams
Brussels Sprouts : 3 grams
Cauliflower : 3 grams
Sweet Onion : 2 grams
You get the point. I have to eat very carefully in order to not go over my daily amount. It's challenging to keep track and still eat right. I'm always looking for recipes for meals that have a very small amount of protein. They are out there... Most of them I have already tried and am getting tired of. I'm trying more and more recipes from my old PKU cookbook. I haven't tried too many but I will let you know when I have found some good ones.
Anyways, here is another recipe from my personal PKU cookbook.
I recently got a package in the mail, opened it, and discovered my formula! I was really excited to finally have it. I opened it, mixed some up, and drank it. I soon realized the taste had not changed. I can get past a gross taste as long as it doesn't smell gross, too. Thank goodness it smells like real strawberries. :) I still feel sick to my stomach for about 20 minutes after I drink my formula. I am not really sure why that is, but I can live through that as well. The only thing I have really been having trouble with is keeping my natural protein to a minimum. For so long I have had free reign on anything I wanted to eat. I never counted how much protein was in anything... Well, since going back on the diet means limiting my protein, I count it now.
I am only allotted 12 grams of protein a day. That isn't much considering how much protein is in vegetables even.
Potatoes : 2.1 Grams of protein
Broccoli : 4.2 grams
Banana : 1.2 grams
Orange : 1.1 grams
Spinach : 2.8 grams
Brussels Sprouts : 3 grams
Cauliflower : 3 grams
Sweet Onion : 2 grams
You get the point. I have to eat very carefully in order to not go over my daily amount. It's challenging to keep track and still eat right. I'm always looking for recipes for meals that have a very small amount of protein. They are out there... Most of them I have already tried and am getting tired of. I'm trying more and more recipes from my old PKU cookbook. I haven't tried too many but I will let you know when I have found some good ones.
Anyways, here is another recipe from my personal PKU cookbook.
Vegetable Pot Pie
(Dough Recipe Below)
Basic Vegetable Mixture:
1 cup diced potatoes
1 cup diced or sliced carrots
1/4 cup chopped onion
Vegetable Option 1
1 cup quartered fresh mushrooms or 1/2 cup sliced canned mushrooms
2 tablespoons frozen peas
Vegetable Option 2
1 cup fresh or frozen cut green beans
1/3 cup chopped celery
Gravy
2 Tablespoons cornstarch
1 pkg G. Washington's golden seasoning and Broth, or seasoning of your choice
1 3/4 cups water
Prepare pastry and set aside. Prepare vegetables from Basic Vegetable Mixture, then prepare vegetables from either of the two vegetable options. As all vegetables are prepared, dividing equally among 8 individual casserole dishes. Sprinkle with salt and pepper as desired.
To prepare Gravy, in a small saucepan mix cornstarch and broth powder. Add a few tablespoons of water and mix to a paste, then add remainder of water; bring to a boil, stirring constantly until thickened. Pour 3 tablespoons of gravy over vegetables in each casserole, just enough to cover vegetables. Cut pastry into rounds to fit casserole dish; place a round of pastry on each pie. Bake at 400 degrees for 12 to 15 minutes.
Yields: 8 Pot pies
Storage Tip:
Pot pies freeze well, either baked or unbaked. Thaw and reheat in microwave oven, or bake as directed.
Phenylalanine (mg) Protein (gm) Calories
Using Option 1
Per recipe 309 8.6 231
Per Pie 39 1.1 29
(not including crust)
Using Option 2 294 7.3 226
Per Pie 37 0.9 28 (not including crust)
Pot Pie Dough
1 1/2 cups Wheat Starch
1/2 teaspoon salt
1/2 cup Butter flavored Crisco
1 tablespoon water
2 1/2 tablespoons light Karo corn syrup
Combine wheat starch and salt in a mixing bowl. Cut in shortening with a pastry blender, fork, or 2 knives, until mixture resembles coarse bread crumbs; sprinkle water over and blend with a fork. Dribble syrup over and continue mixing with a fork. Dough will be moist. Gather dough into a ball, adding wheat starch to your hands if sticky. toll out onto surface dusted with wheat starch, or pat out into desired shape.
Makes enough dough for one of the following:
10 pot pies
8 small turnovers
4 large turnovers
four 4-inch diameter pie pans
Phenylalanine (mg) Protein (gm) Calories
Per recipe 29 0.5 1696
Per pot pie 3 - 170
Per small turnover 4 0.1 212
Per large turnover
or 4-inch pie pan 7 0.1 424
I hope you enjoy that!
Until Next Time,
Phe
Don't forget to check out these web pages!!
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
Follow me on Facebook: http://www.facebook.com/#!/TheDailyStrugglesOfPKU
Follow me on Twitter: Phe_ThePKUGirl
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