Skip to main content


That’s how I’ve felt for the last week… overwhelmed. Anytime anyone asks how we are, that’s my response: “overwhelmed”. We knew that with Reid’s PSC, he may have to have a liver transplant one day. We knew that he had an increased chance of cancer. We knew that this could cause some complications and discomfort. But you think, “we’ll deal with it if and when we get there.” We’re there. And it’s a bit surreal. And very overwhelming. I don’t think my mind has rested since I talked to the doctor following Reid’s procedure last Thursday. I wake up and my mind is racing. I go to sleep and my mind is racing. It’s exhausting! I am thankful to have some answers though, and a “plan” (ha, that’s funny).

Reid has been feeling better since we got home. He hasn’t had a fever in 2 ½ days (we were on edge with his fever spiking every couple of hours after we got home from the hospital), and he’s eating normally. He is very tired though. I’m not sure if it’s because his bilirubin is so high, or because he’s just exhausted from the hospital stay, but he’s just tired.

We met with the liver transplant specialist today, and they gave us some answers to questions we’ve had since last week. I love bullet-points, so here you go:
  • The doctor reiterated that there is no cure or treatment for PSC, and that a liver transplant is his best (only) option.
  • Reid shouldn’t have a problem getting on the transplant list.
  • We will get a call within two weeks to go in for testing, to be considered for the transplant list.
    • The testing will be 3-4 consecutive days of all sorts of tests and consultations with different doctors.
    • After the testing is complete, his doctor will bring Reid’s case before the “Board” to determine whether he gets placed on the list. Again, he doesn’t see a problem with him being placed on the list.
  • We did inquire about whether he would be able to do a transplant if he gets bile duct cancer and it’s a “maybe”… depending on where the cancer is, what stage it’s in, and how aggressive it is, they could potentially still do the transplant. So that makes us feel a little better.

I’m sure you’re thinking, “Great! He’ll get on the list easily!” Yes, that is great. The big however is that he won’t be very high on the list. It all comes down to a MELD (Model for End-Stage Liver Disease) score, and his probably won’t be very high right now. His bile ducts are super scarred, and causing him to have cholangitis, and increasing his chances of cancer, but his liver isn’t all that damaged. We’ll talk more about MELD scores once we have Reid’s score from all of the testing… right now I would just be speculating if I started throwing out numbers.

We’re glad to have answers and be starting the process to get on the liver transplant list. But it’s still going to be a waiting game. And the doctor made that quite clear. He can’t give us any indication of how long we could wait on a liver. We will also (with his support) be reaching out to a liver transplant specialist in Indiana (where Reid grew up) to see about potentially going there, depending on where he would fall on that list (they may be doing transplants on people with lower MELD scores in different regions, based on availability and number of people on the list). We’re going to explore our options.

So, fertility. Or our lack thereof. This is still in the back of my mind, nagging at me. To some it may seem silly for me to even worry about that with the news that we got for Reid. But because of that, I think I worry more. This has caused us to think about things you don’t ever want to think about. Reid is concerned about leaving me a single mother. However, I feel that if he does leave this earth sooner rather than later, I would be comforted having a “piece” of him here with me. That just feels terrible to type. But it’s the truth. I just can’t imagine us not having a family. So for me, I see our fertility window getting smaller. With my AMH (egg reserve) as low as it is, and his health only getting worse, I just don’t feel like time is on our side in this regard either. So we met with the fertility doctor yesterday. We laid everything out and discussed our options. We were trying not to do IVF because of the significant cost (I think we need to save every penny we have for Reid’s health), but he gave us some grants to look into. We are also going to freeze Reid’s semen. If he does get cancer soon, there’s a good chance that he wouldn’t be able to have kids after treatment. So that’s our plan.  

I guess that makes me feel a little better, having some “plans”. But honestly, I wish we could just go back to last week and get a whole different set of news. Life doesn’t work that way, and we’ll play the cards we’re dealt. We are hopeful that everything is going to be alright, and we can make it through anything together. 

We really appreciate all of the prayers, texts, calls, visits, food deliveries, and cards. Our support system has shown up in full force, and we’re so grateful for that. 


Popular posts from this blog

Reid's health - Hospital stay #2

When I started writing this blog, it was dedicated to one topic – infertility and pregnancy loss. I guess that’s two topics, but very closely related. I did not think the type of miracle I would be impatiently waiting for would change. We now need a miracle for my husband, Reid. A month ago I shared that we were in the hospital and he had cholangitis. At that time, we knew that it meant his Primary Sclerosing Cholangitis (PSC) – an inflammation of the bile ducts in his liver – was progressing. But we weren’t sure by how much. So we had follow up appointments and procedures scheduled with his doctors. Next Tuesday he was set to go have a Spyglass procedure so we could see where he was. He had been feeling significantly better after his last hospital stay, and we thought things were looking much better. Early Wednesday morning he woke me around 3 a.m. with liver pains (yes, unfortunately he actually knows what liver pains feel like). We decided to come into the ER, given his last si

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 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