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.
