Moving overseas with PKU

Moving overseas with PKU

Avatar of Dominique

Moving overseas with PKU

September 1, 2010 in Uncategorized

Last Tuesday I arrived at London Heathrow airport after a 26-hour flight from Melbourne. In my hands I carried two suitcases. The first suitcase contained most things you would expect any 18 year old girl to carry: hair straighteners, clothes, books, magazines, shoes. The second was packed to the brim with low-protein pastas, rices, baking mixes and formulas. So began my life as an international student with PKU. I'm an Australian, born in Brisbane and diagnosed at birth with mild PKU. Though I've been on the diet my whole life, my dedication to it has been less-than-perfect. In fact, it's been years since I counted grams of protein. This year I went backpacking around Europe, and stuck to a vague "stricter-than-vegan" regime offset by XP Maxamum, my chosen (and highly inconvenient) supplement. Not to mention three years at a boarding school before that, with school chefs with very little understanding of or interest in my diet. (At said school I had been offered spaghetti bolognese, tofu, roast beef, egg, cheese and even took a bite out of a hamburger without realising my mistake!) But this is serious. I'm going to university now. Time to change. Time to get the diet back on track. My oldest sister, Marielle, picked me up from the airport with her boyfriend, Henry. Marielle is an international student as well: she's been living in the UK since she was 14, at various boarding schools and later university. She graduated from her uni in July and is about to start her job in London. She's also the one who's been my main motivation to get things together with my diet. "Right," she said, as soon as we got home. "I got you something. And I've worked out you're to be on 15 grams of protein a day. Start counting." With that she handed me a brand new copy of the Low Protein Cookery for PKU. We'd decided to switch from "units" (the measurement I'd been counting in as a child) to grams, to make things easier. She'd already done the maths of how many units a day I was allowed and switched it to grams. But that's Marielle... she's always much more organised than I am. I think it comes with being the oldest. The hardest thing I'm facing now (apart from relearning how to count) is organising my treatment over here. To be referred to a specialist, first I have to see a GP. To see a GP, first I have to register with a clinic. To register with a clinic, first I have to obtain and complete NHS forms and bring them along with my passport, my letter of offer from university, and proof of residency. All quite a bother when you're jetlagged. I registered at a doctor's surgery down the road from my sister's house in London. After all the bureaucracy was completed, they collected urine samples, took my height and weight, and asked general questions about my health and diet. PKU certainly turns a routine visit into a comedy. The questions about diet were the first thing. The person seeing me was an assistant, and not a qualified nurse. Usually I like medical professionals, because I can say complicated words like "partially functioning enzyme," and "genetic inborn error of the metabolism," and they'll understand. Unfortunately, this assistant didn't. "So what is your diet? Vegan or vegetarian?" she asked. "Um, no..." I began. "I'm on a medical diet. For phenylketonuria." She paused, not knowing what to write. "Um." "PKU, for short." "Right," she said, scribbling the three letters down. "And what is this diet?" "It's a low protein diet supplemented by a formula containing essential amino acids." "Low protein..." she repeated. "So it is for your kidneys? You have kidney problems?" "Er, no. It's a genetic disorder." A blank look. "It's an enzyme in the liver." Satisfied, she wrote down "liver problems" on the piece of paper and asked how much I drank each week. This was quickly getting interesting. A lot of hand gestures and imaginary Punnett squares later, I'd satisfied her that I wasn't a hardcore alcoholic and it was onto the urine sample. The assistant had obviously assumed that it was a quick, dip-the-stick-in and compare the colours job. I believe it's a test for glucose and protein in the urine. To pass, your little blue boxes have to come out green and yellow. Mine came out two different shades of blue. The poor woman looked at me, holding the stick in the air in shock. I quickly moved to reassure her. "The test will be, er... different," I explained, "because of the level of ketones in my urine. It's how they diagnosed the disorder originally, because of the elevated levels of ketones." I thanked God above that I had read Wikipedia one day in the throes of extreme boredom. It also seemed to assuage the assistant's fears, and she dismissed me. I think she was actually glad to get rid of me. In the end though, I still have to make a separate appointment with the doctor for a referral to the PKU clinic, which, by some stroke of luck, is ten minutes' walk from my house. The unfortunate part is that I can't get an appointment with the GP until next Tuesday (the 7th) and I'm meant to be leaving to university in Scotland on the 11th, which means I may have to repeat the whole process in Scotland in a few weeks time. And all I want are some low protein food lists, some blood tests, and a Nutricia order form! But such is life overseas. You can't just move here, you have to move your medical history as well.

3 Reviews of Moving overseas with PKU

  1. Registered: Dec 6, 2009

    Posts: 0

    Thessaloniki, INTERNATIONAL

    Welcome in Europe, hello from Greece. Great style in writing, so what is it going to be , your subject in the University? I don’t have an experience with PKU, except the short of 9 month (the age of my daughter), but I have the experience of studying and working abroad. It sure is a difficult start, no matter what. However, enjoy every minute of it. I miss it so much! Have a nice stay!

  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Wow… you sound like you are quite on top of things even if you do not think you are organized. You will get this taken care of before you know it and be living the life in Europe. Try to hang in there to get through all of the medical stuff, then enjoy yourself! Keep up the good work :) and continue to blog about your life in Europe :)

  3. Registered: Jul 1, 2009

    Posts: 0

    , INTERNATIONAL

    I’m reading this with high amusement. I’m sorry it’s been such a bother for you, but the way you’ve written it is very humorous and I can completely empathise! I haven’t moved overseas before, but I’ve been on international trips and I know how much of a bother it is doing all the paperwork and all the checks at customs etc.. In Singapore it wasn’t enough to have my doctor’s letter explaining that my formula (Lophlex LQ) was a medical drink: they wanted me to drink it in front of them, which I did with a mixture of amusement and irritation. I hope your time there goes well though and you’re able to get connected into a clinic. Well done for getting back on track and sounds like you have a fantastic older sister who looks after you well :)

Add Comment Register



Comment

Your email address will not be published. Required fields are marked *

Comment *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

Processing your request, Please wait....

    Archives

Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional