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.