Our Current Situation

It’s been quite a while since I’ve given a general update on us. If you’ve been following our Facebook or Instagram pages, then you know that our final embryo transfer took and we are pregnant with twins! We are thrilled, and so far everything has looked great as we are a little over 17 weeks today.

While we are so grateful for the two miracles growing inside of me, I would be lying if I said we don’t have some added stress. And I’m not just talking about the regular stress of having a baby, or the extra stress of having two at once. There’s always this looming question of “what will happen with Reid’s health?” Over the last several weeks that stress has intensified as we get closer to “crunch time”.

Last week we went to Reid’s 3-month check in with the Houston transplant team. As I sat in the waiting room and took my typical picture of my “expect miracles” shirt, I saw my bump. And the reality hit me even harder, that we are bringing twins into this world and my husband is still fighting for his health.

While we were at the transplant center, Reid had bloodwork, an MRCP, and an Echo cardiogram. And we met with his hepatologist and transplant coordinator. Unfortunately, we didn’t have a great report. It wasn’t terrible, but it wasn’t great either. His MELD (Model for End-stage Liver Disease) score has jumped from an 8 to an 11 in the last few months. His bilirubin is up, which we knew because his itching has intensified greatly over the last month or so. And his MRCP showed changes that they’re concerned about. These changes could mean a variety of things – the worst of them being that cancer is confirmed and growing in his bile ducts (cholangiocarcinoma). I reached out to his GI doctor who specializes in PSC (his liver condition) and shared the results (which the transplant center also sent over to him, but I have his personal email and I am not afraid to use it when needed!) He responded early the next morning and said that another Spyglass procedure (ERCP) is definitely needed. This will give us more information on what’s going on in there, and will give the doctor a much closer look at the bile ducts. They’ll also be able to take more biopsies and dilate the bile ducts while they’re in there. They’ve scheduled this for the day after Christmas.

I’m not going to lie – I’m nervous. And I can’t decide what the best outcome of this would be. While it feels odd to wish for a decline in his health – we’ve felt so stagnant on the transplant list. And this alone won’t get him the points he needs for a transplant sooner – cancer would. But we have to be very very careful what we wish for. Cholangiocarcinoma caught at the right time can be treated and would bump him up on the transplant list. Caught too late – well we all know the potential there and likely know someone who has been in that position with various forms of cancer.  

So where are we on getting him a living donor liver? At the moment, we have tested two people for a living donor transplant with the Cleveland Clinic. One of those is a potential match, but if he indeed is a good candidate would require more testing in January. We are working on sending a third potential donor up, and hope that will happen early January. But we are running into logistical challenges with potential donors. Asking them to take a month or two out of their lives to move to another state and go through a major surgery is huge. The testing is taking much longer than we anticipated, and is costly each time we send potential donors up (but worth every penny).
And let’s talk about the reality of the living donor timeline and what they would do for us. If we find a match and surgery is scheduled, Reid will need to be in Cleveland for 2-3 months to recover post-surgery. The timing of that will depend on if and when we find a match, and how soon surgery can be scheduled. The twins are expected early May (our doctor won’t let me go past May 11^th), and at the very least I’ll be on travel restrictions in late March. We are preparing that I won’t be able to be there for Reid’s transplant, and he may not be here for the birth of the twins. And while that gives me us major anxiety knowing how much we depend on each other for support and the fact that we may not be able to physically be there for each other, if that’s how this happens and we have a healthy dad and healthy babies – that’s all the matters. It won’t be easy, but it will be worth it.

We know miracles happen. We’ve seen it first hand with these babies. One of which was originally deemed an “abnormal” embryo and was set to be discarded. These were our last two embryos that we would transfer. And they stuck. Both of them. If that isn’t a miracle, I don’t know what is. So I know a miracle is possible for my husband.

We haven’t pushed it much lately, because we are fortunate to have the option of doing a living donor transplant, but the ideal situation for Reid is still a deceased donor transplant… and it would have to be a direct donation. As a reminder, a direct donation would mean that someone has a family member that is passing and they elect to donate that person’s liver to Reid directly. For more information about how this works, visit grayliverdonation.com.

We know that the next several months will unfold as they should, and have faith that another miracle is in store for us. Not one of us can say how this will happen, but it will, and I’m hoping it will be another amazing story to share.

In the meantime, we still need your help. We need you to keep sharing Reid’s story, and keep praying and sending good thoughts our way. We are constantly reminded of how amazing our support system is, and for that we are so incredibly grateful.