Skip to main content

The Fight for a Liver

It’s been a little while since I posted about my husband, Reid, and our fight to get him a new liver. Honestly, I think I’ve focused on talking about our fertility journey more because with that I have more answers. And a timeline.

I have been so anxious this week. And while many of you probably think it’s because we’re getting ready to start IVF round 2, it’s not completely. I am so anxious about what is going to happen to my husband. Because without him, none of this even matters. I’m not saying the infertility and pregnancy losses is the lesser of our struggles. I don’t know that there’s a comparison… each struggle has its own significant challenges, and each affects me differently depending on the day. When we first learned of Reid’s diagnosis of Primary Sclerosing Cholangitis (PSC), it was always a maybe he’d have to have a liver transplant one day, and maybe he’d get cancer. But one of those maybes has become a definitely, and the other is now a very likely. It just feels like too much some days.

A couple weeks ago, Reid had another Spyglass procedure so the doctor could see how his disease was progressing, check for cancer, and get more information to hopefully apply again for exception points on the liver transplant list. (If you haven’t been following our story, his disease doesn’t put him very high on the transplant list, so we have to apply for exception points. His bile ducts are very blocked and scarred, but his liver counts aren’t near as bad. And you can’t get new bile ducts without the liver.) I’m not sure what I expected to hear after that Spyglass, but the doctor shared that he was very concerned about possible malignancies. And it kinda knocked the wind out of me. His disease has significantly progressed, and he thinks he needs a liver as soon as possible. He mentioned that he would reflect that in his notes, and we could use that information to apply again (we were denied in August) for exception points.

Fast forward 4 weeks and last week we finally got the notes from the doctor (after several calls). And the notes were very direct. Even though he had told me in person about the possible malignancies (which all were benign, thank God!), and how much his disease had progressed, to hear the nurse read the notes to me brought tears to my eyes. I honestly don’t know whether I was happy to have that information so we could apply for the points, or if I was sad because I was hearing again how likely it is that my husband will develop cancer if he doesn’t get a liver soon. But we are here… closer to another one of those maybes. My husband could very likely develop cholangiocarcinoma soon if he doesn’t get a liver transplant. My heart started racing, and it hasn’t stopped since.

We went to a party with some friends last night, and it was hard. Most days, I feel like I've been so good about dealing with all of this, but I stood looking at my husband and became painfully aware that I could lose him. While the other couples in the room are dealing with whether to set up an automation system in their home, or how to decorate their nursery (yeah, that brings on a whole other set of tears), we are dealing with the likelihood of cancer, and hoping that my husband gets a new liver before that happens. Sometimes it just makes me so angry. Why were we dealt such a crappy hand?? Infertility and the pregnancy losses weren’t enough, now we have to fight for my husband’s health and a new liver for him. And I mean fight. I can’t tell you how many times we’ve been on the phone with different doctors, and the transplant teams. His transplant coordinator in Indy knows me by first name… I can call and say, “hi, it’s Abby” and she knows exactly who I am, and all about my husband’s case. And there is literally not another couple that I know that is dealing with the same struggles. We’re "that couple" that everyone feels sorry for. And I hate it so much.  

So the transplant team in Indy applied for more exception points this Thursday. They have applied to get to a MELD score of 22 points, which would put him right in the range to get a liver within 3 months or so. But we’ve been denied before, so I’m trying not to get my hopes up. If he is denied those points, they are going to immediately reapply to get him to 15 points. Which is still pretty low. Not out of the question for him to get a liver in Indy at 15 points, but not a quick turnaround either.
If he gets the 22 points, that would obviously put our IVF on hold. Which also gives me anxiety. Reid needs a liver more than we need to have kids, but that doesn’t make the desire in my heart any less. And I’m afraid that if we put it off too long, then the option of having biological children will be taken off the table. But without him, I couldn't do it. 

If you’ve been praying for us, please pray that Reid gets the exception points next week. We need a win. We need to move forward and get him a liver before he develops cancer.

I have been trying so hard to be positive and spread the message to “expect miracles”. Right now, I think I need help with that. I don’t think the shirt deliveries could have come at a better time, because it is a constant reminder to stay positive and remember the support that we have behind us.

On our way to the party last night, I was telling Reid what a hard time I was having and how I hated being “that couple” that has all the issues. He said “well, I think it’s hard because we’ve been so open about it” to which I replied, “It would be so much harder if we hadn’t. I feel like everyone is in this with us… while they may not know the true pain and anxiety that we have, they are still there beside us, showing their support. There’s no way I could keep moving forward without that.” And it’s the absolute truth. And for that I’m grateful. For each of you reading, I’m grateful. 


  1. I wish I could do more than just have you in our prayers but please know you are there...everyday! We are praying for all your miracles!

    1. We truly appreciate it!! I wish there was something more even I could do, but there isn't. It's all in God's hands and I have to trust he'll take care of it all.


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

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

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