Beat it with a Stick

Confirmation that what is likely going on is CF related liver disease. Joey’s enlarged, angry liver is producing gallstones due to his CF. To deal with this, we’re going to keeping going on as is and continue to treat it with ERCPs (as he has been doing for the last 13 years) until things get to the point where he needs a liver transplant. I do not want to be alarmist; we are NOT looking at liver transplantation right now. Eventually he will need one, but not yet. The plan is to go home and wait until Joey is feeling as good as he possibly can be (approximately a few weeks to a month down the road hopefully), have some blood tests done and then re-evaluate the situation at our next appointment with Joey’s liver doc (this will probably happen at some point in November).  

So that is where we’re sitting. Not exactly an ideal situation, but we will see how things go. Apparently Renee and I will have to put the kibosh on our plans to carve me up like a Christmas turkey and take out part of my liver since if it did come to transplant, in Joey’s situation he’d have to go with the “traditional” donor. Damn.

He is out of hospital now at least. We are coping by keeping a low profile at OJ’s tonight, watching movies, and we bought a few new articles of clothing that we don’t need. (Am I too old for skinny jeans? If so, too bad cause it’s too late!)

Last FYI: we’re not really in a chatty mood about the whole situation. By all means, if you have to ask questions, ask – we’d rather that than have rumours started – but both of us are feeling pretty burnt out and done, so we are choosing to bury our heads in the sand until that is no longer productive. I’m not trying to be terse, but that’s where we’re at and we don’t really want to open the flood gates. Hopefully everyone understands. That said, the situation is not hopeless. After all, he’s already had a double lung transplant. As it was explained earlier today: dealing with lungs is like dealing with wet tissue paper, whereas a liver could be beaten with a stick before it’s chucked in. (I am not making this up, I swear). Good to know.

Lucky I’m a chick who digs scars.

Kirstin and Joey

2 thoughts on “Beat it with a Stick

  1. Carole September 30, 2009 / 11:00 pm

    Hey guys:

    Wishing you lots of positive energy….you’re in my thoughts and as you know, I’m here if I can help in any way…you both rock, you know that!
    With love

  2. Koren September 30, 2009 / 11:27 pm

    You’re so terse, I love it!

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