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Life Update and the Holiday Season

I've been pretty quiet over here lately. Truth is, I'm somewhere in between wanting to soak up every single second I have with these babies (and making the most of what free time I do have) and knowing I have an amazing opportunity to educate others on post transplant and post "trying-to-conceive" life. And I struggle with sharing the hard days because as hard as some of them feel, I constantly have a voice in the back of my head saying, "but these struggles are for good reasons". As we get closer to Christmas I have such mixed feelings. I have butterflies in my stomach thinking about the fact that this is our first Christmas with not one but TWO babies. And Reid is almost one year post liver transplant (how is that possible?!) And then I think of all of the families, the Sparks in particular, that will be experiencing their first Christmas without a loved one. And the couples who thought for sure THIS would be the Christmas that they'd have a baby in their arms or on the way. And the holiday parties and social media pictures are just one more reminder of their empty arms.

Don't get me wrong, I'm not letting the struggles of others take away from celebrating our joys. I think if anything it makes me appreciate and celebrate them that much more. Because life is precious and you never know what the next day, week, month or year can bring (good or bad). And what better way to honor those that are missing someone special or yearning for another family member by truly appreciating what we have? 

So this post is not asking for prayers for us, or even to share "struggles"... We'll call it a life update.

As most of you know, Reid had a hernia repair at the beginning of November. The surgery consisted of them opening up his transplant incision and making the repair with sutures (it is standard practice at our transplant center not to place mesh in a transplant patient, as it is a foreign object and there is more risk of infection and complications). When they closed him back up he had 23 staples, which tells you the size of the cut they made. One of the major challenges post surgery has been the fact that he can't lift over 5 pounds for 8-12 weeks. That has been quite interesting with twin babies, to say the least. He is not able to lift them, which has been hard on Reid, the babies, and myself. They don't understand why he can't just lift them when they reach out to him (so he does his best to lean over and just hug them wherever they are). And he feels as though he is missing out on some major bonding time with them at a point where they are really solidifying their connections to others. This also means he can't do simple things around the house like take out the trash, move a box in from the front porch, or move a pot of water to the stove. Which has made us think more about how and when we do things, and how he can be more active and helpful with the babies. I wish I could tell you that we've excelled at this, but this has probably been one of the biggest struggles for us as a couple. I have tried my best not to resent him or the situation, but I'm human and there are days where I'm just downright pissed off (and admittedly a total bitch) about it. I'm working on that, and remind myself often, "this is a good challenge." 

We were told that infection was one of the biggest risks of the hernia surgery (or any surgery for a transplant patient), so they had to change some of Reid's medications and watch him closely. Fortunately, he is healing fairly well and has not experienced any infections as a result of the surgery. But any change in his medication can have some pretty major side effects, and he started experiencing some of those as they were changing things to ensure his body healed as best as possible.

Around Thanksgiving, he started feeling "off" and had some major scabs in his mouth which were causing a great deal of pain. One great thing about our transplant center is they require the transplant patient to memorize the list of side effects from their meds (and they quiz you on it!) and Reid is great about knowing what's normal and what isn't. The symptoms he was experiencing were not normal. Over that weekend, we called the transplant center and they ordered blood work for him. Tuesday after Thanksgiving we learned he has Cytomegalovirus (CMV). Which for any healthy person is not that big of a deal. But for transplant patients it can be lethal (if not caught quickly) and is one of the biggest risks for post-transplant patients, especially within the first year. Fortunately Reid caught it quickly, and his levels were low. He was not at the point where he would need to be hospitalized (thank God) and we could treat it at home with some major medication (again with more side effects, but they would knock out the CMV hopefully). In that blood work, they also learned that his white blood cell (WBC) count was quite low. That number indicates how well your body will fight off infection - so basically his immune system was even weaker than it should be for a post-transplant patient and he would have a harder time fighting off the CMV. The last time this number was low (this wasn't quite as low, but very close), they sent him straight to the hospital to be admitted, monitored, and treated. His transplant coordinator wanted to avoid a hospital stay if possible (hello, hospital = germs and infections) so she called in an injectable medication for him to do at home for the next 3 days. And our insurance denied the medication. We knew that they would cover it though if he was admitted into the hospital, because they had the last time (I won't even getting into how backwards that is). So we fought, knowing that a hospital stay was the last thing Reid needed during cold and flu season with a compromised immune system. A week later (yesterday) we finally learned that they will cover it. Friday Reid had more blood work and not only has his CMV come down significantly and the medicine for that appears to be working, but his WBC has somehow increased! Not a lot, but enough to where they want to hold off on the medication for that. Which is great, because that medication comes with severe pain in his bones (yes - pain IN his bones.) 

So the last month or so has been quite interesting. I find myself aggravated some days because I feel like we'll never not have a health issue with Reid. But that's no fault of his, and he is so much better than before he had the transplant. Before we were talking certainty of cancer and whether he would have a transplant "in time". Now we are talking medication side effects and (minor) post-transplant complications. And how to care for our twin babies through the challenges. My how things can change in a year. 

Again, I share all of this as an update to our lives and to share that there will always be challenges (for everyone, everywhere) but I try so hard to keep perspective. Some days I fail miserably, but I am a true believer that sometimes we just need to have a little pity party for ourselves no matter the situation... and then we pick ourselves up and vow to make the next day (or week, or month) better. 

As you go into the holiday season, please say some extra prayers for those that are missing family members this year. Those that are in the midst of their infertility battle. And those that are battling chronic illnesses. We are doing our best this holiday season to appreciate and celebrate each day that we have with those we love, and hope that by doing so we honor those that are hurting. 


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