Experiences with PKU

Stargal

Just wondering if anyone has PKU and how they cope with it? My dad had a liver transplant in 2003, and as the donor had PKU, he now does too. He finds it a bit difficult, since he used to love to eat loads of seafood and meat and other protein-rich food so has had to cut back a lot. He's still allowed a small amount every day, and gets specialised PKU food (bread, milk, biscuits etc).

For anyone who hasn't heard of it before, here's the Wiki entry. Basically it means that the person can't handle a type of protein and so is severely restricted in what they can eat - usually they're only allowed tiny portions of meat, fish, cheese, milk, etc. Usually people who have it have had it since birth, but doctors have told us that my dad's case is probably the first time that anyone has actually acquired it later on in life, so it's a bit of an unusual case.

I'd be really interested to hear about other people's experiences with it and any problems that they've had with it.

d-redser

Laika,

I only noticed your post now.

I have PKU and I am extremely shocked at the fact they gave your father that liver. I have always been told that I won't be able to donate my liver for obvious reasons.. Wonder how that got through the system..

Anyway, how is your Dad doing? How many exchanges is on per day?

If you ever need any advice just let me know and I will try and help...