Skip to main content

Planning... and more planning

If you know me, or have been following along, you know I’m a planner. I also like to have control. Over the last couple of years, there have been many things out of my control and plans have gone totally awry. Lately we’ve been able to make some plans, and some back-up plans.

Last week we met with the transplant team in Indy. What a great experience that was. As I’ve mentioned, we had a good indication that Reid would be able to get a liver much quicker in Indy than he would here in Houston. The team there gave us a lot of hope, and confirmed that the process would be quicker. Reid’s MELD score is still low, but they are going to apply for exception points. The team in Houston said the same thing, but in Indy they seemed confident that he would be awarded the extra points. So we’ve got two scenarios…
  1. Reid is awarded the exception points, and would have a MELD score of 22 or 28. This would automatically put him a position on the list where he could get a liver very soon after.
  2. Reid is not awarded the exception points, and we wait… and wait… and wait.

So we’re planning for him to be awarded the exception points, and hope to God that we’re not disappointed. We won’t know for a couple of weeks. The team in Indy met today and voted to add him to the transplant list (woohoo!!). They will list him as “active” on the list, which means he could get a call at any point (after he gets the exception points) and we’d have to fly up to Indy on the next flight. This was something that we didn’t even think was possible before meeting with their team. Apparently, there are some livers that they get 24-36 hours notice for (if the donor is on life support), and the transplant surgeon has agreed to let us stay in Houston for a couple more months and see if any of those livers work out. Which is nerve-racking. But also super exciting. That means that within a matter of a couple of weeks, we could get a call and have to jump on a flight for a liver. Once we get to Indy, the liver may or may not be a perfect match. This could happen a couple of times. If he doesn’t get a liver while we’re waiting here in Houston, we’ll end up moving up to Indy in a few months. I’m sure you’re wondering, “why wait to go up?” Well, we’d like to minimize our stay there because a) We’ll be paying for a mortgage and temporary housing at the same time, b) My job is hourly and once we relocate, I won’t be able to work near as many hours as if I’m here in Houston, c) Reid can work remotely, but we don’t want to push it. Once he gets his liver, he can do 2 months of short-term disability before his pay is docked to 60%. Once he does have the liver transplant, we’ll have to stay up there for 2-3 months while he recovers from surgery, and then they may be able to transfer his care back to a hepatologist in Houston. So we’ve made our contingency plans for both, and we’re as prepared as we can be for either situation.

I’ve avoided the infertility topic for a couple months, because honestly I was just hoping we’d wind up pregnant. But we aren’t, and that doesn’t look like it’s going to happen within the timeframe we’re hoping. With the amount of uncertainty that the transplant timeline has, we’ve realized we have to take the fertility timeline into our own hands. Back in January, when we had our 3rd loss, we talked with the fertility doctor and he said that we should try for 6 months on our own, but then he would recommend we move forward with treatment. So here we are, 6 months later. Now we’re looking at my low ovarian reserve, and Reid being out of commission for an unknown amount of time. We also don’t know what the anti-rejection medication will do to his fertility (there’s not much research done on this topic), and those are medications he will have to take for the rest of his life. It’s time to do what we can to make sure we don’t come out the other side of this transplant with no eggs left, and Reid unable to father a child of his own. In the next week and a half, we’ll start the process to freeze embryos. That will take 3-4 weeks, and hopefully we’ll get some perfect embabies to freeze until we are ready to transfer them into my uterus (planning for after he gets the transplant). After talking with the doctor today, I thought I’d be relieved to have a plan. But honestly, I have a big knot in my stomach. I have been hoping and praying we wouldn’t get to this point in our fertility. Not only that, but spending the money on this during a time when Reid may be getting a transplant feels irresponsible. But I just can’t fathom the idea of missing our “window” and coming out the other side childless. So here we are, planning to make a baby by pumping my body full of hormones and having surgery to retrieve eggs and then hope and pray that they create embryos. Our doctor will also do testing on all of the embryos to ensure they do not have any chromosomal abnormalities that 2 out of our 3 babies had. That does give us some great peace of mind. But I’m still anxious, and sad that we’re here.

A couple of weeks ago, I was having lunch with a friend whom I hadn’t seen in a while. We were swapping infertility stories, and then we started talking about Reid being on the liver transplant list. Towards the end of the conversation, she got the biggest smile on her face and said, “I’m just so excited for you!” I look at her confused. Excited? She must have read the look on my face as she then said, “You just have so many amazing things to look forward to. Reid getting a liver, you guys have kids one day. I’m just so excited, and I can’t wait for all of those things to happen for you.” Huh. That’s the first time someone had approached our situation that way. And it really surprised me. I honestly wasn’t sure how to react. I have gotten used to people giving me the, “I’m sorry, life sucks” responses. But excited? What do I say to that?


I walked away from that conversation and just kept replaying that in my head. “Excited.” I think I can get on board with that. What a unique way to look at our situation. So, I’m going to try to keep reminding myself of that over the next several months. Be excited – we have a lot to look forward to. 

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…