Skip to main content

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. 

Comments

Popular posts from this blog

Cholangiocarcinoma and the Fight for a Liver

2:00 in the morning, and I’m wide awake. Let me tell you something about myself… I very very rarely have issues sleeping. Like I can count on one hand the times that I haven’t been able to sleep through the night. I’m that person that will wake up, roll over, and go straight back to sleep. But tonight I’m wide awake.
Today was a rough day.
Hell, the last two weeks have been rough.
My husband is believed to have cancer. In the bile ducts. Which is the thing that we’ve feared the most over the last four years. And the worst part? They can’t even prove it with biopsies, because it’s that far into his bile ducts, and that hard to detect. Our saving grace was always, “if he gets cancer, as long as we catch it in time, we’ll be able to automatically get exception points on the transplant list, and that will move him up the list quickly.”
But we can’t even do that. I feel stuck. And afraid.
Two weeks ago, Reid had a Spyglass (ERCP) procedure because his Houston transplant team noticed …

The Story of our First Potential Living Donor

I am so excited to share the story of our first potential living donor with you. The conversations with this guy, and the selflessness of his offer, have touched our hearts in so many ways.
In January of this year, I woke up to a Facebook message from a high school friend, Desmond Parker. And I laid in bed crying as I read it. He couldn’t sleep the night before and decided to re-activate his Facebook account. The first thing he saw in his timeline was a blog post that I’d written with an update on Reid’s health. And something in him said “I need to help”. He spent the next hour or so researching living donor transplants before messaging me, and he “couldn’t find a reason why NOT to do it.” His message said that he wanted to be tested to see if he was a match for my husband.
Y’all, I hadn’t talked to this guy in several years. He had never met my husband. He felt no obligation to us other than we had a need, and he wanted to help (cue the tears). Dez checked all of the boxes on pape…

The Outcome of our 1st Embryo Transfer

On June 14th, we went in for our first ever embryo transfer. Since we weren’t PGS testing this time, our doctor suggested we go for a day-5 fresh transfer. We agreed that we would make a game-time decision as to whether we would transfer one or two. And we ended up transferring two morula embryos.
Since that day our emotions have been up and down. I started out being so optimistic and surprisingly calm (so calm that Reid felt he needed to be the nervous wreck to counterbalance). I was quite confident this would work, and we’d be celebrating a pregnancy soon.
Our doctor’s office had me come in last Monday (4 days past transfer) to check my progesterone and estrogen levels (both hormones they have you take to better the chances). Levels came back within normal range, and I was so happy to see that (we almost always have to add more hormones during any pregnancy). On Thursday of that same week, however, it was a different story. My hormone levels dropped and the doctor wanted me to st…