Wednesday, May 19, 2010

life changes AGAIN

Whew! Been a while since I posted. We've been going through lots of stuff here. Hubby has not been feeling well for a long time and finally found a doctor that asked the right questions so that we've discovered that hubby has (possibly, still waiting on official diagnosis) partial urea deficiency. Basically, he is unable to process protein, so he gets a build up of ammonia in his system. He's missing some enzyme that breaks the protein down. So we've so far learned that he needs a low protein diet (we're guessing it should be around 25g per day). When his ammonia levels are up he becomes very fuzzy headed, lethargic, tired, etc. And visually, I notice his skin gets red and blotchy and his eyes get red rimmed. He is tired all the time and the slightest thing wipes him out. He replaced the seal on the bathroom toilet and ripped up just a small part of the floor (toilet was leaking) and he had to take an hour long nap after that (and he was out cold). He's still working full weeks, but says it's so hard to think clearly, so he's really struggling, which cause stress, which triggers the ammonia thing, which.....yeah, you get the picture. He did have a biopsy done, however the specialist didn't bother reading over the paperwork that the doctor sent over, so she assumed she was simply testing him for cehrosis of the liver/alcoholism, and was pleased to report that his test was negative. When he asked for what and she said 'alcoholism', he was NOT a happy man! We've gone quite a long time waiting for a diagnosis and had hoped that this biopsy would get us there quickly, and she flubbed it all as she didn't read the doctor notes. Ah, such fun. And so, the unknown continues and we are doing our best to cope. Interesting learning a whole new way of cooking! Whew!

Well, this is so short after such a long while, but kids need help with school. Will try to post again MUCH sooner!
God bless!

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