Overwhelmed

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.