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Not Yet

“Not yet”… that’s what we heard again this week. We learned yesterday that Reid did not get the exception points that we applied for on the liver transplant list. One more set-back. I really felt like we were on a forward track, and that he would get the points. I mean, the doctor pretty much guaranteed us it would happen. So we’re disappointed. We had all of our plans set, as much as possible, but of course we go back to Plan B once again. Honestly, I’m not totally devastated. At least not today. I’m disappointed. And aggravated. But I think I’ve become a little immune to set-backs at this point. I think if this would have happened 3 years ago, I would have had a total meltdown. But not now. I guess I can be thankful for the fact that the last couple of years have made me tougher, and I am more able to roll with the punches.

So where does this put us? Honestly, we’re not sure. The transplant coordinator has said that they are going to try to reapply, but unless Reid’s condition changes, I don’t know that they’ll award the points. You may be thinking “If they didn’t give him the points, maybe his condition isn’t so bad”… yes and no. Yes, his liver really isn’t in bad shape. But the bile ducts in his liver are (the scoring system for the list doesn’t measure the bile ducts). And his chances of developing cancer in his bile ducts (Cholangiocarcinoma) remain high. And his chances of developing cholangitis, which he’s been hospitalized for twice this year, are high. So it’s now become a “wait and see” game. We wait and see how his bile ducts hold up and hope he gets a liver sooner than we think. As far as his quality of life… he’s still working, just tired all the time. He itches like a meth head (seriously, he wakes me up in the middle of the night scratching), he gets pains in his abdomen off and on (which is probably related to his Ulcerative Colitis), and lately he has been getting pretty bad dark circles and sunken-in eyes. But overall, he’s not in terrible shape.  

Now we go to Plan B… finishing IVF. Next week I start stimming (hormone injections) in order to hopefully get some good embryos to freeze. Our original plan was to just freeze the embryos, and then transfer them into my uterus after the liver transplant. But now we will plan on transferring sooner rather than later. I’ll do a whole separate post about IVF and the protocol that we’re following. But this is what we're doing - moving forward. I’m tired of waiting on the “perfect timing”, because that perfect timing never seems to work out for us! So while we wait, we will move forward with the rest of our plans and try to focus on the now!


I’ve heard a couple of times in the last day, “God will take care of the timing, He has a plan”. And yes, that’s true. But I’m so freaking tired of waiting to see what that plan is!! 
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