July 25, 2008

Life & Living with PKU

By KateW

Well, I’m not sure how to start off, so forgive me if this beginning is a little bit rough! As I’m hoping to start trying for a baby soon, my intention is that this blog will follow my journey through the preconception diet and maternal PKU, but as it’s my first blog post, I suppose I should introduce myself and tell you a bit about my PKU journey thus far J I might also use this blog as a food diary, which I’m normally rubbish at keeping!

My name is Kate. I’m 25 and have classical PKU. I’m Australian, and grew up on the edge of the outback in Queensland, but I live in Newbury near Reading in England with my fiancé and our two puppies. I’m a bit of a Jill of all trades – my day job is PR, but I am also the managing director of a company that provides translation and interpreting services, which I run with two friends.

I guess in a way I see the opportunity to write this blog a bit like therapy, as well as a way to help others avoid the mistakes I have made and regret. In recent years I’ve really struggled with my diet, and I think to be able to write things down and vent my feelings will be really helpful, especially as I plunge headlong into starting a family.

As a child, I never really thought about my diet. It was just a part of me, and who I was as a person. I was never ashamed of it and I didn’t hide it. I was never teased and my parents made sure I knew what I could and couldn’t eat. I had a fairly normal, and as an only child, perhaps even a privileged upbringing – I attended a good school, travelled overseas, rode horses and I had lots of friends. It wasn’t until I was about 16 that things really started to go downhill, and by the time I was 18, I was pretty much completely off diet.

My PKU demise started with formula. The necessity to drink my formula has always been the bane of my life. I could handle PKU if it weren’t for that. As a child I would kick and scream when it came to formula time, and my mother and father on several occasions had to hold me down, hold my nose and pour it down my throat. I feel really sorry for them now, and I feel bad for having behaved like that – I realise now that I must have put them through emotional hell and back. The problem is, I think I have developed a lifelong aversion to formula. As a child, I was on Aminogran and it was truly foul stuff. Even now, I can’t say ‘that word’ – the A word – without involuntarily gagging and pulling a truly ugly face. When I took it I spent most of my day feeling bloated and nauseous, only to then have to take it again just as I was feeling better. Sometimes it would even make me throw up.

When I was in my teens my doctor told me about Maxamum XP. It was still foul stuff but I could get it down and didn’t have the usual four hour long bout of nausea after it. Still, I hated it, and after a while I started pouring it down the sink when mum and dad weren’t looking. Then, when I was 16, I went to Japan for 6 weeks on a school trip. I think in the whole six weeks I tried to take my formula once, and ended up throwing out the tins and telling mum I’d taken it all. It wasn’t until I was 17, however, that I really started to resent my diet. I had just finished high school and went away for a week with some friends to celebrate. When we all went food shopping some of the others started picking on me and my diet, and complaining when I picked up items I needed. I ended up paying for part of the shopping, but not actually having anything much I could eat. This led to a huge argument where one girl said to me that she didn’t believe there was anything wrong with me and that my diet was “attention seeking bull(fill in the blanks)”. I was devastated, and I couldn’t wait to go home. This was closely followed by several bad experiences in restaurants, including one waiter in Brisbane who literally yelled at me and reduced me to tears because I asked him for something that wasn’t a dish on the menu.

I didn’t realise it at the time, but from that point onwards, my diet got steadily worse. I refused to touch formula, take blood tests or go to clinic. I started eating whatever I wanted, and tried all manner of things that I know I shouldn’t have. I deeply regret this now, and if I could turn back time I would have done things so differently. Now I have a taste for things that I know I can’t have but crave desperately most days. I have tried everything I decided I was missing out on, and unfortunately for me I liked the vast majority of it. Thankfully I also didn’t like a lot of stuff – I discovered that beef is disgusting, I love the smell of smoked mackerel but not the taste, and I hate McDonald’s burgers. However, there’s lots of other really bad stuff I do like too, and this is a battle with myself that I fear I will now have to live with for the rest of my life.

I made a couple of feeble attempts to return to the diet over the years, but nothing ever really stuck. The level of medical guidance available to PKU adults in Australia is truly appalling, and I never felt that I was properly equipped to deal with my condition as an adult. I had to travel 8 hours to see a doctor, who I don’t think actually specialised in PKU. I had to wait weeks on end to get blood test results back, and I had limited contact with a dietician. They changed the way I counted protein from the units system I had used my whole life, and I felt confused and bewildered by it all. They also encouraged me to use more low protein products, but the range in Australia is somewhat limited in comparison to what’s on offer in the UK, and I didn’t like most of it, or I couldn’t get good result with it when baking.

So, I slid off diet again. It wasn’t until I came to England for what was meant to be a working holiday in 2006 (at the age of 22) that I decided it was time to get on track again. I found the medical system here pretty tough to get my head around at first, but I eventually got a referral to a PKU clinic for adults in London. I went and met with the team there and I broke down in tears with relief at how kind and understanding they were – I had been absolutely terrified of going back to a PKU clinic. They organised for me to spend a day in the metabolic kitchen where one of the dieticians let me sample all of the low protein products, gave me loads of information and recipes and taught me how to cook some basic recipes. I left for home that afternoon with two lasagnes I had made, two gorgeous loaves of bread and a great big smile!

Since then I’ve been up and down, but I’m trying hard to stick to my diet. Not long after I went back to the PKU clinic I met my soon to be husband, Ed. I was worried about telling him about my PKU, but I had no reason to be. He was very understanding and early on in our relationship took it upon himself to learn about PKU so he could help me. On 9 June 2007 he took me to Greece and proposed. We are to be married in Australia on September 7 this year (not long to go now!), and soon after we hope to try for a baby. I’m booked in for a clinic appointment in the first week of October, at which time I will be put on the preconception diet to get my levels down for pregnancy. Ed is being amazingly supportive about the whole thing – he is my rock, especially on my bad days when I find it tough going. He motivates me to keep going, encourages me and gives me the kick up the behind I sometimes need when I start to let things slide. No matter what, I know he’s there for me every step of the way. He’s even learning to cook PKU friendly meals, and we’re planning to spend another day in the metabolic kitchen, together this time, at the hospital in London so he can learn about the different products, how to cook them and how to count exchanges and manage the diet so we can work together through our journey that is to come.

Even when I was at home and bad on my diet, I was always trying to do things for the greater PKU good. I helped out on a few government lobbies to get financial help for people with PKU in Australia, wrote press releases, did lots of fundraising and supervised camps for kids with PKU. I’m hoping that I’ll be able to get that involved in the PKU community here in England too!

So that’s my PKU journey to date! Every day is still an uphill battle, but I WILL do this, because I know that if I don’t it will affect my whole life and I’ll only have myself to blame.

Topics: General Nutrition, Thoughts on PKU |