Wednesday, December 3, 2014

PKU Awareness Day!!

Hello Everyone!

Just in case you haven't looked at a calendar yet, today is December 3rd, 2014! What's so special about today? Well...

On this day 2 years ago (2012) William and Kate announced they would be having their first baby.
12 years ago (2002) The iTunes Music Store was launched in Canada.
23 years ago (1991) Alan Freed received a star on Hollywood Walk of Fame.

And Probably the most important....

IT'S PKU AWARENESS DAY!!!!

Do you know everything about PKU?? Do your loved ones understand your disease?
If not, share this post. You can share it on Facebook, Twitter, whatever you like. Or you can direct them to the "All About PKU" link above!



 
 

Thursday, September 18, 2014

The Past 6 Months

Hello all,

I told you all in my last post that I would inform you all what this 6 month mark means to me. It means I am coming along despite the struggles I have been faced with.

Let's go back and start in December. Yes, I was still pregnant at this point. In December, my protein levels started dropping. I started with levels in the 120s. I was working 60ish hours a week that month and eating well, but the baby was taking all my protein! By the first week in January I was 7 months pregnant and had levels down in the 50s and 60s. I was beyond tired and constantly felt like I was going to faint. Since I worked with sharp objects, my boss thought it would be a good idea for me to stop working. My levels continued to be unstable for the remainder of my pregnancy.

Then, on March 12th, my little lovebug was born!! I had dreamt of holding her in my arms for so long!! Labor was hard on me, physically and emotionally. But that was only the beginning of my hardships.



Everyone always told me that babies were pure bliss, but they never mentioned how hard it would be emotionally. Before she was born, my protein levels were extremely low, immediately after I had her they went through the roof. I don't have an exact number, because the hospital never told me what it was, but I sure felt the effects. We stayed in the hospital for 5 days, and to be honest I don't remember a lot of it. I was so foggy I couldn't think straight. Good thing my husband was there to hear what the doctors had to say because I couldn't think well enough to retain the information they were telling me.

In the first few weeks that we were home getting settled into a new life, I was dealing with "the baby blues." (Where the hormones are going down at a fast rate, leaving mom to feel extremely emotional for no reason at all.) Dealing with the Baby Blues was something I never expected to have to do. I wasn't aware of this "condition" until I was leaving the hospital. The Baby Blues are supposed to go away in the first few weeks, if they don't then it turns into Postpartum Depression.

I was counting on the Baby Blues to go away, but they never did. I wasn't thinking of harming myself or my family, but I was dealing with some terrible anxiety. I talked to my doctor at my 6 week check up, and she told me that I had Postpartum Depression/Anxiety. She prescribed me a low dose antidepressant. As soon as I got home I emailed my specialist to inform her of the new medication and make sure it wouldn't affect my levels in a negative way, or the Kuvan I was supposed to take. I say "supposed to take" because I wasn't taking it at all.

With the new little one and all the new tasks that brings, I had forgotten to reapply for NORD, the organization that helps with my copay for Kuvan. My application is only good for the year, as in calendar year. My application had expired on January 1st, and since I was taking a lower dose of my Kuvan, I was able to make my current order last until the baby was born.

My specialist told me that we should get my protein levels under control before I try the antidepressants. She said that my current protein levels could be causing every symptom of Postpartum Depression that I was experiencing. I was more than happy to hear that. Something in me wanted so badly to not have to take the antidepressants, and I don't know why. I, immediately, updated and submitted my Nord application. A few days later, I got a letter in the mail telling me I was approved once again for NORD, and I ordered my next refill of Kuvan.

I started taking my Kuvan regularly, as I had done before. Things got better!... Or at least for awhile. Even though I was taking my Kuvan and eating correctly, my levels were fluctuating and I felt the affects for sure! By this time, I couldn't just email my specialist, she had retired suddenly. I was lost, I didn't know what to do.

I decided after a while that I HAD to do something. It was getting hard to go through everyday life, it was affecting my coping, communication and thinking skills. It was affecting my relationships with everyone around me, and I couldn't let it go any longer. I emailed my representative from Biomarin, the maker of Kuvan. She told me that I needed to get in and see the Nurse Practitioner that was seeing patients at my clinic until they hired on a new specialist. I called my clinic to set up an appointment, they wouldn't schedule me. Instead, they had me speak to the Nurse Practitioner over the phone. I explained what was going on to her, and she suggested I cut back on my Kuvan, lower my dosage. She said taking too much Kuvan could cause some of the symptoms I was having. I went from taking 1800mg of Kuvan a day down to 1200mg a day.

I have been taking the lower dosage for a few weeks now, and I am not so sure it is completely solving my problems. It is helping, however.

The last 6 months have been the most eventful, wonderful, and bliss filled time in my life. But it has also been the most challenging and trying months in my life. I am still a work in progress, but one thing is for sure... God sure did bless me with such a wonderful little family!






Until Next Time,
Laura

P.S. I hope you all enjoyed this post. It was very hard to admit to myself and now the public what I have been struggling with. It's embarrassing to admit.

Friday, September 12, 2014

Big Day!!

Just so all of you know.... Now that this blog is called Living with PKU, I am going to be writing about my life, even things not PKU related.

 That being said....

My Baby Girl is 6 Months Old Today!!!

 
Ok, so I know it's not that big of deal to many of you, and for that I am sorry. But, I decided that I am finally willing to talk about these last 6 months. So be looking for that in the next post!

Tuesday, September 9, 2014

Season of Change

As all of the returning readers can see... We have a whole new look!! That comes complete with a whole new NAME!!

You all can read my reasoning behind the changes in my last two posts. I don't think it is necessary to repeat myself again. Along with the new changes, I am going to be writing more about my life, not just PKU. PKU does affect every aspect of my life... But it doesn't take up my whole life. The new name is LIVING WITH PKU, so I am going to be writing about how I live, PKU and all.

I have introduced my self before, but since we are starting fresh I will do it again.

My name is Laura. I am 23 years old, and I am living with PKU.

I was born in 1991 and as a result from my newborn screening test, I was diagnosed with Phenylketonuria, or PKU, when I was 3 weeks old. Neither of my parents knew what PKU was or had ever heard of it. They were quite shocked and confused when they got the call telling them of my diagnosis.

My brother Rodger and me.

These are my parents, Rodger and Dena.
My parents were told that since I had it, both of them were carriers of PKU. They were told that somewhere in our family history someone from each side had to have had PKU. They went as far back as they could on each side of the family to see where the gene came from and both came up empty handed.
SIDE NOTE: I believe it was God's Will for me to have PKU and there would be no trace of it in my family history.

My parents were very good at watching my diet. I was, what they now call, hyperphe. The doctor told my parents that I was on the very mild side of this disease. I could even have a slice of cheese a day when I was a toddler!! That was very rare, according to my doctor. My parents watched my diet closely, except when I would sneak cheese by biting off the little corners of the block. Tehehe.

I grew up pretty normal, I would say. I went to public school all the way to graduation, with the exception of my 3rd grade year. I was homeschooled my 3rd grade year. My mom would pack me lunches normally. On the rare occasion I had school lunches, they had low protein options for me. When it was grilled cheese sandwich day, they made a special sandwich for me with only one slice of cheese in the middle and they would set it aside for me. (The perks of growing up in a relatively small town.)

I did great staying on diet until I started playing sports in middle school. I started off in 6th grade running cross country. I was fine with my diet through that. The hard part was in 7th grade when I started playing basketball. I was working out so much at practice that I was hungrier than ever! Low protein food didn't fill me up for long, so I started eating more protein filled foods without even a second thought. That is also when I stopped taking my weekly blood spots.

My 7th grade year I played basketball and ran track, then in 8th grade I added volleyball to the mix. That's when things started getting bad. I was eating protein and not counting my intake. I wasn't on diet at all. It was so easy to fall away from the diet. I didn't think about what I was doing to myself, and it was hard to notice how far from being on diet I really was with everything going on in my life.

In 8th grade, after spring break, I noticed a weird rash in the folds of my arms. It itched and burned so bad!! I asked my mom to take me to the doctor. We went to see my pediatrician. He ruled out an allergic reaction since I hadn't used any new products. He said the only thing he could think of was eczema. He gave my mom the name of an over the counter medicated lotion for me to use. I used it as instructed. The lotion helped, but never cured it. After awhile, it sort of went away.

In high school, I continued living off diet. I still saw my doctor and metabolic specialist, but didn't really take into account what they were telling me I should do. In my mind, I wasn't eating too far off the diet. I wasn't eating meat or drinking much milk, but I didn't take into account how much protein I was eating.

I graduated high school in 2009, the same year I started dating my now husband. I tried explaining my PKU to him, and of course he had questions. The thing that should have been an eye opener to me then but wasn't, sometimes I couldn't answer his questions. I had no idea how much I didn't know about my own condition. I look back now and can't believe how dumb I was being. I didn't know the answers to these questions but I didn't try to find out.

I started college in the fall of 2009. Being a typical busy college student, I had "no time" to try to keep up with my diet. I would go to class, come home, study, but I could never retain any information. I couldn't figure out why. I figured I just wasn't the college type, so I dropped out, moved back home and got a job.

In the winter of 2009, my weird rash came back. But this time it wasn't just in the folds of my arms. It was on my arms, chest, stomach, neck and face!! I went to my doctor and he ruled out an allergic reaction. He gave me a cortisone shot and told me to take Benadryl until it went away. After a few days it disappeared. Only a week later it came back, and WORSE! I went back and he did the same treatment. This time it went away, and only came back in the folds of my arms, so I didn't worry about it and treated it like eczema.

In July of 2010, my boyfriend proposed!!
 

And on February 26th, 2011 we got married.




You can't tell I like my wedding pictures, can you?

As we adjusted to our new life, being on diet was the last thing on my mind. We moved 165 miles away from our home town. But after 8 months, we were home sick and since things at my husband's job were going sour, we decided to move back.

After almost a year of marriage, in January of 2012, we started talking about when we wanted to start our family. Since I was told from a young age that having biological children wasn't an option for me due to my PKU, I thought our only option was to adopt. I decided to go online and research the possibilities of having healthy children and was amazed at the number of women with PKU had normal and healthy children!! I called and made an appointment with my specialist, who by this time I hadn't seen in over 5 years.

My husband went with me to this appointment. He had so many questions that I couldn't answer and he was excited to finally learn more. At this appointment we found that there had been more discoveries and learned more about the affects of PKU.

Apparently, my rash, that I had multiple times, was due to having too much protein. It was explained to us that the protein had no way of getting out of my system, so it kept circulating through my body searching for a way out, and eventually it would turn itself into oil and get out through the rash on my skin. My not being able to retain information in college, my protein levels were too high and affecting my memory. My foggy mind, my moodiness, my memory issues, my lack of quick thinking... yep, you guessed it!! It was because my protein levels were through the roof!!

In researching the possibilities of having children I came across this thing called Kuvan. So I asked my specialist about it. She explained that is was pharmaceutical BH4, which is the amino acid in the liver that breaks down protein. She told me that Kuvan was like a huge vitamin for my liver, that it would take the amino acids that my liver already had and makes it work better. She told me that some people don't respond to this medication and that there was a trial phase. She set me up to do the trial, but first she wanted to see how serious I was.

In February of 2013, I met with someone from Biomarin, the maker of Kuvan, to start my trial. She flew from San Francisco, and met with my husband and me at our home. It was a very interesting and great experience to see how much the company actually cares about the patients.

I started taking the medication thinking it would take the whole month of the trial phase to see if I was a responder or not. It didn't take that long at all. We found that my body responded within the first 48 hours! The rest of the month was spent finding out how much my tolerance had gone up. We found that my tolerance had gone up from 12 grams of protein per day to 35-40 grams per day!

I stayed on my Kuvan, and in June of 2013 I went to see my specialist again. This time she told me that since my levels were stable for the first time in my life, my husband and I could start a family whenever we wanted. I was SO excited to hear that!

On July 2nd, 2013, we found out we were pregnant!! I tracked my protein intake and continued to take my Kuvan. Everything was going well and in November 2013, we learned we were having a little girl!

My levels started dropping dramatically in my third trimester. I tried talking to my specialist to see what I should do, but she wasn't really giving me an answer. So I decided to start drinking 2% milk to see if that would bring up my levels. It did. I also cut my Kuvan dosage in half. By the end of my pregnancy I was drinking 24oz of milk per day, plus eating 35 grams of protein!

On March 11th, I was induced. And on March 12th, 2014 at 4:30am my daughter was born.
 
I am as happy as ever!!
 
My name is Laura. I live on the Southern Oregon coast with my husband, Chipper,

Our daughter, Elaina,

And our two dogs, Peach and Oden.
 
 
 
 
 
 
I am 23 and living a wonderful life with PKU.
 
 
 
 
 
 
 
 
 

 
Until Next Time,
Laura

Thursday, August 28, 2014

Fresh Start

Hello Everyone!

As most of you know, read or can read, in my last post I said goodbye. I was having a really hard time being positive about my PKU and the blog about my struggles wasn't helping anything. As you can imagine, dealing with the struggles in everyday life was hard enough, but then writing about them and editing the blog posts were making it harder. In some ways seeing them on my computer screen was making it more real (as if dealing with them on a daily basis wasn't real enough for me).

Once I told my husband I said goodbye and had decided to end the blog, he begged me to keep blogging. He told me even though the struggles were hard, that doesn't mean I have to only make the blog about the bad things. I can write about living daily life, good and bad.

He reminded me that just 2 short years ago I was lost with my PKU. I didn't know as much about it as I do now. After a lot of research and joining groups on social media, I realized how much I didn't know about my disease, and ultimately myself. I know that sounds lame, I didn't know myself, but it's true. A lot of my characteristics, my moods, my whole life has been touched by PKU.

He made a point that is playing in my head over and over again as I pondered picking up blogging again. That point he made.... There are a lot of people out there who don't know as much about the disease as they should, or as I do. There are a lot of people who are now where I was 2 years ago. They have no idea that PKU plays a part in almost all, if not all, aspects of your life.

So, as you can tell, I have decided to restart this page. But in doing so, I am going to be making a lot of changes. Starting with the name.... This blog is no longer going to be called THE DAILY STRUGGLES OF PKU. It is now going to be called LIVING WITH PKU. The new name takes the negativity out of it. There is no need to feel sorry for ourselves, we are living life with a disease that as of now has no cure. Having pity for ourselves and asking others to pity us doesn't help us at all.

I am here to support those who, like myself, have PKU, those people living with PKU that don't have as much information about it, and those with loved ones living with PKU.

Until Next Time,
Laura (Formerly known as Phe)


Friday, July 4, 2014

Goodbye For Now

I am having a hard time finding the words to say for this post, but here we go.
 
I am not going to be posting on this blog page for a while, possibly ever again. I'm not sure what will happen but I have decided to start a new blog page.
 
As I go back and read my previous posts, I realize that this blog is a real downer. Even in the title, it shows a pessimistic view on PKU as a whole. While having PKU is no walk in the park, it's not all bad. I have joined many groups on Facebook that consist of people around the globe who have PKU. Since joining these groups I have learned many things, but the most prominent:
                        EVERYONE THINKS OF THEMSELVES POORLY BECAUSE OF PKU
              EVERYONE BLAMES THE BAD THINGS THAT HAPPEN IN THEIR LIVES ON PKU
                        NO ONE IS THANKFUL FOR THEIR PKU
 
I know that last one sounds weird. But honestly, out of everything that God could have given you He chose PKU for a reason. He could have given you a much worse disease or condition. But He didn't. It's time to be thankful for what you have and what you don't.
 
"In every thing give thanks: for this is the will of God in Christ Jesus concerning you."
I Thessalonians 5:18

Wednesday, March 26, 2014

Baby Time!!

As you may know, due to my last post, I was finally able to get pregnant... Well, I would like to introduce to you my sweet daughter, Elaina!
 
She was born on March 12th after 22 hours of labor (I was induced on the morning of the 11th). She weighed in at 6lbs 7.2oz and was 20.75in long!! She did have a moderate case of Jaundice when she arrived and had excess Biliruben (not sure if I spelt that correctly). But after some photo therapy and 4 days in the hospital (starting the day she was born), she is doing great!! Like every other baby born at the hospital she had her 24 hour screening test, and it was rushed to the lab. We haven't heard anything back from that yet, so her pediatrician is hoping no news is good news. On Monday we went in for her 2 week well baby check up and did the next and final phase of the newborn screening test. Her doctor says she usually hears back within 2 days (which is today) if something is abnormal and if she doesn't hear anything today she will be calling the lab on Friday to make sure. OF course she doesn't do this with every newborn, but since I have PKU and Elaina has a 25% chance (if daddy is not a carrier) of having PKU as well.
 
We are anxiously awaiting to hear back from her doctor, hoping she doesn't have PKU, and enjoying life with our new little addition to the family.
 
Until next time,
PHE
 
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