Skip to main content

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!! 
Labels:

Comments

Post a Comment

Popular posts from this blog

Our Tiny Miracle - Kaylee June

Let me tell you about a little girl who has stolen our hearts, but almost never came to be. After three natural pregnancy losses and two rounds of IVF (in-vitro fertilization), we started our third round of IVF in the summer of 2018. Two of our pregnancy losses were due to chromosome issues so we did PGS (Pre-implantation Genetic Screening – checking the chromosomes of embryos for abnormalities) testing for our first two rounds of IVF. All (4) of those embryos were deemed “abnormal”… they either had an extra chromosome or they were missing one. And they were all issues that were not compatible with life. So going into round 3 we were looking for a “fresh start”. To our surprise, our doctor (who is amazing at thinking “outside of the box”) suggested we forgo the PGS testing for our 3 rd round. Each of our chromosome abnormalities, including two of the pregnancy losses, were all different abnormalities (it was a different chromosome missing or extra each time). So he thought it wa
9 comments
Read more

After the Storm

I’ve stared at a blank page on my screen several times over the last few weeks, trying to find the words. Today I’m committed to sharing, no matter how those words come out. So please bear with me. Over the last few months, I’ve dealt with some serious anxiety. And I’ve avoided sharing. Because I had babies recently. And often the response is, “You’re a new mom, it’s normal to have anxiety.” And that’s true. It is normal to have “new mom” anxiety, and to have a new level of stress that comes with raising tiny humans. However, what I’ve been dealing with is so much more. I wake up in the middle of the night with a pit in my stomach and have to catch my breath. I often think about losing my husband or one of our babies, and I spiral into a pit of anxiety. Every time I walk up and down the stairs with a baby in my arms, I am anxious that they are suddenly going to throw themselves out of my arms and go over the railing. If Reid doesn’t do something for the babies the exact way I wou
2 comments
Read more

Our Current Situation

It’s been quite a while since I’ve given a general update on us. If you’ve been following our Facebook or Instagram pages, then you know that our final embryo transfer took and we are pregnant with twins! We are thrilled, and so far everything has looked great as we are a little over 17 weeks today. While we are so grateful for the two miracles growing inside of me, I would be lying if I said we don’t have some added stress. And I’m not just talking about the regular stress of having a baby, or the extra stress of having two at once. There’s always this looming question of “what will happen with Reid’s health?” Over the last several weeks that stress has intensified as we get closer to “crunch time”. Last week we went to Reid’s 3-month check in with the Houston transplant team. As I sat in the waiting room and took my typical picture of my “expect miracles” shirt, I saw my bump. And the reality hit me even harder, that we are bringing twins into this world and my husband is st
1 comment
Read more