A Member Blog by Anna Hoar, PKU Adult
Christmas indulgence –> getting my phenylalanine levels down to trial Kuvan. Wish me luck!
So, I’ve decided to document this process for my own records and for anyone who is interested. Kuvan has finally been approved for the PBS for adults in Australia. Given that not all patients will respond, a trial must be conducted to see if the patient responds. We only get ONE CHANCE.
So here I am trying to get my phenylalanine levels down to the right amount. They need to be stable for the test, around 600. This means frequent blood tests. This is nothing new, however they haven’t been 600 for a long time. I’ve been very lax with my phe intake and had levels around 1000-1200. For the trial I need to take them twice weekly while preparing and then when I actually start it, it will be a lot more frequent for that particular week.
To get my phe levels to 600, I’ve been having 10g protein a day since about 27th December. This means actually doing my diet properly. I’ve had to up my formula (Sphere) from 3 to 4 per day. Instead of eating veggie burgers when I eat out, I’m having salads. Instead of snacking on things 2-3g protein, I’m snacking on things 1g. On 4/1 my levels were 949. On 9/1 they were 764. This is not easy but I’m getting the hang of it again. This is how I ate for my entire childhood. It’s much harder when you are the one responsible. I am so thankful to my parents for being strict.
Lastly, I had 2 wins this week with dining out. Usually, salads at restaurants include some sort of protein – chickpeas, quinoa, couscous, polenta etc. It’s very hard to find one I can eat and most restaurants aren’t willing to or can’t remove these things (because they are
pre-mixed in) but this week two restaurants have (1) omitted couscous and (2) replaced tofu with roast potatoes (pictured). This is something I am so excited about because it is rare and partially what motivated me to make this and further posts.
Blood spot time: usually once a month. In prep for trial: 2 x week (same as when I was prepping for/during pregnancy). Best done before eating, but I had a coffee first this morning 🙈
$157 worth of specialist low protein food
Dinner at the cricket… plus a few chips donated by the kids. Low protein zucchini slice made with FATE flour, pretend bacon* Bio Cheese and other ingredients.
I was amazed to see that they sell pulled jackfruit burgers at Optus Stadium and in my pre-Kuvan level dropping days would have happily chowed into one, despite not being able to eat the bread. Very frustrating that a place finally has jackfruit SOMETHING but I can’t eat the other ingredients when I’m being strict, but oh well!
* “Pretend bacon” is Belladotti Salad Toppers Bacon Bits from Woolworths – 0.8g protein per serve.
Another place with a Jackfruit Burger!! I couldn’t pass it up so I ordered it without the bun. So yummy!
A slight glitch in the matrix last week gave me a level of 779 just after Australia Day, which I think may have been caused by too much (normal) rice at lunch time. Brought it back quickly by Monday though to 667.
Next week they are going to call me about doing the trial, now that I’m ‘stable’ 🤞🏻🤞🏻