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PSC Awareness Day: Reid's Story

In June of 2014, just three months after we were married, Reid was diagnosed with Primary Sclerosing Cholangitis (PSC). 

His doctor explained that PSC is an auto-immune condition in which the bile ducts in his liver were very scarred, and could eventually lead to a liver transplant (the only treatment for this disease) or cancer in the bile ducts (cholangiocarcinoma), which is very deadly. There is no cure for PSC, and it would be a waiting game to see how it would affect his body. There was no "typical" timeline as the disease affects everyone differently.

At the time, we weren't exactly sure what to expect. I remember we went to breakfast after that doctor's appointment, to discuss what we learned and process it. To be totally honest, Reid was quite upset. He saw it as a death certificate (which is completely opposite of his usually optimistic attitude). I was of the mindset that it was all a MAYBE. Maybe he would need a liver transplant. Maybe he would develop cance…
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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…

Our "secret" Frozen Embryo Transfer

So, we did this thing. Almost two weeks ago we went in for a “secret” embryo transfer. We thought, “how cool would it be if we could surprise our friends and family with good news?!” so we didn’t share publicly about this transfer. Although, if I’m being completely honest, that wasn’t the only reason we didn’t share. I was also trying to protect our hearts, and keep us all focused on Reid’s transplant journey.
On August 1st, we transferred one of our day-6 “good fair fair” embryos. We had weeks of prep leading up to the transfer, which included oral estrogen and a new nightly injection of progesterone in oil (PIO). We remained “cautiously optimistic.” And until this past Monday, I really believed that it had worked and we were pregnant. All of my hormone levels had been right in range and my progesterone was higher than it had ever been before. This was it. But it wasn’t.
Our official “beta” (blood test to confirm pregnancy) wasn’t set until Wednesday, the 15th (today, if you’re read…

The Continued Fight for a Liver

Hi, friends. Okay, my head has stopped spinning (a little) since our trips to Cleveland and Alabama. And we have a plan (ha – that’s funny). I should say we have some ideas of potential plans (which have already changed since I started typing this). But you all know how our “planning” has gone so far. So we’ll throw some ideas out there and hope something sticks.
Both trips were very productive. But also exhausting. Sitting in hospitals waiting and trying to make sure you ask all of your questions and absorbing all of the information is hard work! The last day of our travels, I felt the same as I do after a big move or event. You spend all this time planning, and then it comes and you are left processing your thoughts and figuring out how happy you are with the outcome. I have spent the last two months researching and talking to so many transplant centers and doctors and nurses, and working to get medical records sent where they need to go. All of that led up to the last two weeks. …

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…

How my husband has helped me through infertility and pregnancy loss

Lately I’ve had a couple of conversations with men who are facing infertility with their wives. And it got me thinking about all of the things that my husband has done right throughout this process. It must be so hard for men to know exactly what to do for their wives as we feel all the feels of infertility. I’m not going to say that infertility is harder on women than men, because I don’t necessarily believe that. But I do believe that men and women process their emotions differently. As does each individual person. So I’m not going to sit here and say “this is what you should do for your wife”, or “this is what you need”. I’m no expert, and every person is different. What I will do is share what my husband has done for me that has helped me through infertility and pregnancy loss. And maybe there are some nuggets in there that you can take and use for yourself. I’m by no means saying that my husband is a perfect husband, and he does all the right things. He and I had to really learn…

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 …