Skip to main content

Posts

Showing posts from 2018

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…

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 …

IVF Round 3 Protocol

We are about a week away from starting the “priming” process of IVF round 3. I’m really excited for our next round. Yes, I wish we didn’t have to do it. But we do, and I’ve decided to completely embrace it and be totally hopeful. In the past I’ve worked so hard to guard my heart during our rounds. Which is 100% normal when you’re battling infertility. At some point, you just get to where you want so badly for everything to work out, but you’re also realistic and know that it doesn’t always work the way you’d hope. But I’m going into this round full of hope. I’m still nervous to say “when this works…” or “when we’re pregnant…” but I’ve caught myself saying that a couple of times. During my nightly breathing exercises (as recommended by my acupuncturist), I’ve been saying “We will get pregnant this year, we will have a healthy baby next year.” Crap, that’s scary to type out. And I can hear my superstitious husband on the other end of this saying “noooo!! Don’t say that out loud!!!” But…

Infertility and Pregnancy Loss: Dee's Story

I asked my mom to write a blog post for National Infertility Awareness Week. She struggled with infertility and pregnancy losses of her own, and is now experiencing the pains of infertility again as Reid and I struggle through it. I'm proud to share her words, and appreciate her sharing her heart with you all! This is Dee's Story. 



I am honored to share my story this National Infertility Awareness Week.  Many of you know the story of my daughter Abby and son-in-law Reid, their infertility issues and the miracles we are all praying for. You may not know that I went through some of these issues myself.  Only it was the early 80's and no one told me it was "infertility".   In fact no one really talked about the subject.
I had two miscarriages before having my first child, Abby.  It was a two year ordeal but at the time it felt like a lifetime.  Everything in life had fallen into place perfectly to this point.  I had graduated college, started a career, had a fairy tal…

Flip the Script: Why I'm GRATEFUL for our Infertility Journey

The theme of this year’s National Infertility Awareness Week is “flip the script”. I have struggled with how to incorporate that theme, until I was sitting at my support group meeting on Monday night. I sat there talking with my therapist, who leads the group, and we started discussing all of the things I’m grateful for. Talk about flipping the script. So often we view infertility as this ugly, terrible thing that happens to 1 in 8 couples. Don’t get me wrong, it is ugly, and it is terrible (see my post from Tuesday). But there are also so many hidden blessings in it.
Infertility is really f-ing hard, y’all. But I’m so grateful for this experience we’ve been through.
I’m grateful that it has taught me patience. Patience while waiting for a baby, patience while waiting for our next round of treatments, patience while waiting for results. We have had to wait SO MUCH throughout this process. I would argue that I was probably the most impatient person in the world when we started this …

Infertility is...

Infertility can mean a lot of different things to different people. Some couples have the official diagnosis of “infertile”, while others just wait, and wait, and wait to become parents, with no real explanation of why. Infertility affects 1 in 8. Yet, until you are experiencing it, you may or may not even know that others are having the same struggles. Since we’ve started this journey, I’ve learned so much, and have met so many people along the way that are dealing with this struggle. This diagnosis – or lack thereof. It affects each couple differently, but also the same. It is hard. And UGLY. So what is infertility?

Infertility is a DISEASE… not to be cured by “relaxing”Infertility is yearning to be a parent so badly, but month after month feeling disappointed and defeatedInfertility is “giving up” on conventional methods, and realizing you may never carry a child of your ownInfertility is watching all of your friends give birth to perfect babies while you yearn for that experienceIn…

Overcoming fear

Reid and I just traveled to Los Angeles (if you haven't seen the overload on your social media feeds.) We had such an amazing time. But let me tell you what you didn't see in your feed... fear.
I had so much fear going into this trip. Reid's parents gifted us money for Christmas that was to be used only for a vacation. What an amazing gift, right?! My first reaction was excitement. And then the fear set in. Can we really travel right now? They knew we've been afraid to travel since Reid's cholangitis attacks last year, and after him being listed for transplant. We also haven't exactly had the discretionary funds to travel.I struggled for the three months leading up to our trip. I was so grateful for this amazing gift, but I was also so fearful. What if Reid gets sick while we're gone? What if he gets sick on the plane ride? What if we get another call for a directed liver donation? What if Reid ends up in the hospital and we have to cancel our trip? What …

Time to take a chance

I feel like we are often on a rollercoaster ride that never ends! The last couple of months have definitely been up and down in regards to our (in)fertility journey. We met with a urologist in January, and he ran three tests on Reid… a semen analysis, a DNA fragmentation test, and a sperm fish. And then we waited (and waited, and waited) for all of the results to come in. And of course, they weren’t completely conclusive. No black and white answers. So we met with a genetic counselor, as referred by our urologist. She reviewed our history as well as the results of the testing we did on Reid, and she concluded that we may both have issues that are contributing to the chromosome abnormalities we keep getting. But there’s no certain medical proof of that. Reid’s semen analysis and DNA fragmentation test came back normal. The sperm fish, which checks for abnormal chromosomes in his sperm, came back slightly abnormal. The normal ranges on this test are crazy… they top out at 0.1-0.5%. And…

Your "husband's cousin's friend..."

We all know someone… you know, that person that struggled with infertility for years and then they stopped trying. And then boom – they got pregnant. Yep, everyone has one of those stories about someone they “know”. Can you do me a favor, though? Quit sharing them with people while they’re in the throws of infertility. I know you mean well. I know you think it provides hope. But here’s what it really does (at least for me)… it tells me that you’re not truly listening to our story and understanding where we are. It suggests that the tens of thousands of dollars we’re spending on fertility treatments, tests, hormones, vitamins, acupuncture and doctors, are a waste. That we should just “stop trying”, and “quit stressing”. Then all of a sudden we’ll be pregnant. It doesn’t work that way for most. I love a good “miracle” story just as much as the next person, but these particular stories burn. And being open about your infertility journey means you hear these stories… all. the. time.
Per…