Resurrecting this blog ...

Hi anyone still out there! I have decided to resurrect this blog as I prepare for pregnancy. And not just any pregnancy ... A PKU pregnancy. Follow me through the hell of the delicate balance between the PKU diet and light exercise to achieve perfect metabolic balance, weight maintenance, and Phe levels of 2-6mg/dl.

I have been struggling with PreCon (pre-conception PKU for pregnancy) for the past several months and I've been super frustrated. Mid September I said "screw it" for awhile. I have been thinking about it now and again and trying to decide what my next step should be. One problem is that I can't keep my levels low enough even though I am consuming loads of low-protein calorie filled products along with unhealthy sugars. Yes, these foods aren't healthy but they are the only foods that contain ZERO Phe. So to get a level of a 10.9 after gaining back weight I spent so much time trying to lose from eating the free calorie-filled foods, it was just NOT okay with me. I used to email my dietician weekly, but when I got frustrated I didn't for almost a month.

I decided I needed to meet with my OB. First off, we are supposed to meet with our OB initially and see if they are comfortable with and willing to take on a PKU pregnancy because many are not. They don't know enough about it so they are uneasy about monitoring PKU patients. Secondly, my weight gain was really bothering me. OBs deal with weight as a part of pregnancy, so I also wanted to ask him if he would advise losing more weight before trying to conceive because I am definitely not happy with my weight. At this point I still didn't know how much I weighed because I didn't want to get on a scale. At the heaviest I was before losing last year I was 185 and then got down to 165. I honestly felt like I could be 185 again, so that means add on a 20+ pound weight gain during pregnancy plus what I gain before that on PreCon -- well over 200 pounds, which I'm just not okay with.

So I went in to meet with him today. I was pleasantly surprised that I weighed in at only 174 -- just 9 pounds up from my lowest weight (which was over a year ago). I am SO HAPPY that I decided to do this. First of all, he must have read up on PKU because he knew everything about it and I didn't have to explain anything at all. Secondly, he gave me tips for managing my diet and calories that my dietician has never mentioned to me, and they really made sense to me!! I can tell that he is going to be very involved in communicating with my RD and NP from my PKU clinic and I was happy to hear that he wouldn't be referring me to MFM (Maternal Fetal Medicine -- aka "high risk" pregnancy doctors). I know that he is going to take great care of me. Sidenote: I was also worried about it being awkward because I now work with him and my mom has known him for 15 years, but it wasn't at all.

I have decided that I will start PreCon again starting next Monday. Until then I am going to order more of my supplement, purchase the folic acid that he recommended I get, make lists of food that are low in Phe and carbs, make lists of ideas of food to take to work, and figure out an eating schedule that focuses on smaller, more frequent meals instead of 3 large meals. I know this is going to be the hardest thing I have ever done but just meeting with my OB and the encouragement and support he gave me motivated me and made me realize that I can do this!

I'm blogging about this journey so that I can look back because I hope I can someday help other women with PKU as they face the same challenge that I am facing now.

I'm Back

After a 5 month hiatus, I am back. A lot has gone on that has affected my weight loss journey and PKU and pregnancy plans.

I am now in my last semester of nursing school and I am insanely stressed. Because of this, I decided to put off the pregnancy planning until after graduation. Over the last 5 months I have gained back 3 pounds, so I am back to 168, however, I just joined a new gym yesterday that has an indoor track so I am going to get back to running! 

I look forward to getting back to my weight loss journey!

20

Twenty pounds down today!!!

I am super excited! My weight on my driver's license is now correct!! I'm very proud of how far I've come in just about 4.5 months, and if I can lose another 20 I will be almost to my goal weight!

News on the PKU front is not as good. My dietician brought me down to 6 grams of protein a day which, you guys, is virtually NOTHING. I can still eat fruits and veggies but it is so hard when I have to go to classes basically all day Tuesday-Thursday and work on the weekends. My food intake right now is just crap but I'm doing what it takes to make it happen. Hopefully my next level will reflect it.

Quick Update!

Hi all,

I've been completely swamped with classes, work, and schoolwork for the last 2 weeks! But here's a quick catch-up on my weight loss/PKU journey!

I am down to 168 pounds, which is 17 down from my starting weight! I am FINALLY beginning to see and feel a difference in my clothes, and it is so exciting! However, it is not exciting that now all of my hoodies/zip up sweatshirts are now massively too big for me :/ My husband told me that as a reward for all my hard work, when I'm ready he will take me shopping for new jeans!! That won't be for quite awhile (my waistline/stomach is where all my fat goes to so I haven't seen too much of a difference there yet), but an exciting prospect nonetheless!

I sent in a Phe level last week and was actually happy with the 6.8 mg/dl result I got, mainly because I was low on my calories for that week, so I expected it to be higher. My dietician didn't seem as pleased, lol. Don't get me wrong she's amazing and she even said she knows all of this is easier said than done, but reminded me that she thinks it's best if I get in 1200 calories a day.

I skipped out on sending a level this week because school was stressing me out so much that I didn't have time to worry about how many calories I was or WASN'T eating. Next week I'll send another. I'm hoping to be to at least 20 pounds lost by the end of September. That would put me at 20 pounds lost in 4 months, which is close to what it should be (24 pounds) based on the myFitness Pal plan. I'll be proud of that anyways though :)

Happy First Day of Fall!!

Update

Well, I'm back in school and I have had ZERO time to run recently. I'm really going to try and go out today though, because it's a beautiful fall day.

I weighed myself yesterday and I'm down to 169!! I'm so happy to be out of the 170's, they seemed to drag on and on forever. So 16 pounds lost now.

I sent in a Phe level today to my PKU clinic. I'm not optimistic about the results because I've been under my calories for most of the week. Being catabolic to begin with, those days are not going to help my levels at all. I'm hoping it's not higher than an 8.

Everyone have a great weekend!

Week 3 Day 2 C25K

Like I said, I went out for Day 2 of Week 3 today. It was so much better and easier than the first day!

I peeked at Week 4, and I'm terrified. I'm going to do Day 3 of Week 3 either tomorrow or Sunday, most likely!!

On the PKU front, I'm going to start sending in weekly levels. I don't think that they will change because I totally think Nikki (my dietician) is right, that I'm catabolic (not eating enough calories for how much I weigh) because I'm trying to lose weight. So until I start eating the calorie amount to at least maintain my weight (1,870 vs the 1,200 I'm eating now), I don't think my levels are going to go down to where I want them. I guess we'll see though, you never know.

During the month of September, I've decided to challenge myself to drink only water. I am doing great so far. I just wanted a unique challenge for my Mission 101 and since I've been doing so well with my weight loss, I decided that September would be the month to accomplish another goal!

Have a great weekend!

Pleasant Surprise and Week 3 Day 1 C25K

Wednesday I decided to stop procrastinating weighing myself after vacation and finally got on the scale. I was definitely expecting a small gain. Imagine my surprise when I saw that I actually lost another two pounds!!

I am now down to 170 and that means I've lost 15 pounds!! 

I am so so excited!! I can hardly believe that I didn't gain weight. I know that we did a lot of walking but I mean I also ate more than normal, although I do have to say I didn't go crazy with eating like I normally would on a vacation.

On Wednesday I got back to my C25K and did Week 3 Day 1. Man, it was ROUGH. You did the 5 minute warm up, then alternated run 3 minutes, walk 3 minutes, run 90 seconds, walk 90 seconds. On the 3 minute running circuits I thought I was going to die, but I made it through! Anything is better than nothing at all, right?

I'm about to go out later and do Week 3 Day 2, so I will let you know how that goes!

Have a great weekend everyone!