"I love a good nap. Sometimes it's the only thing getting me out of bed in the morning." - George Costanza

There's so much on my mind.

I've been meaning to explain a bit more about what it means to be on The List. I briefly went into what kind of testing needed to be done to be considered for an organ transplant, but the testing doesn't end once you're approved for the list. Your place on the list for a liver is dependent on what's called a MELD (Model for End-Stage Liver Disease) score and it ranges from 6 to 40. It's determined by bloodwork and gives an estimate of how likely you are to survive the disease over the next three months.

When Joey was put on the list at the end of September, his score was a 24 which meant he would need monthly bloodwork to update it. In October, it was a 23. The next time his MELD was calculated, it was 25, which bumped him up to weekly blood tests. The following week, it was 26. I've never had a better understanding of a Catch-22 until now. We don't want Joey's number to be getting higher because that means he's getting sicker, but if his number stays high, he's more likely to receive another offer call. Additionally, we don't want him to get too sick because then the doctors may be hesitant to perform the surgery. You gotta find the sweet spot for liver failure.

There are many considerations for placement on The List (though technically it should be lists plural because of the way it's split by blood type). Joey has been hovering at the top of the blood type O list since September and for several weeks, he was definitely number one. Unfortunately for Joey, O can only receive O, but O can be given to anyone. So even though Joey is one of the sickest Os in our region, a donor with O blood can (and probably will be) given to someone else. Of course, this is oversimplifying a very complicated and heavy process, but it still stinks for us.

With each MELD update, we feel a new sense of urgency to finish things just in case, but then another week goes by and we wonder how on earth we ever got that first call. And recently I realized that exact same thing could happen again. Some people go through multiple false alarms before getting a viable organ. 

I'm officially stressed out.

We celebrated Thanksgiving and I selfishly got my way in hoping that Joey wouldn't get the call before Thanksgiving so we could celebrate 'normally' with both of our families together. The day was really nice and the food was good and everything seemed to go smooth, but it was also a day where Joey was visibly in pain, slept way more than usual, and hardly ate anything. His MELD for the week had gone up 2 since the previous week (generally people with a score of 28 are hospitalized) and we were so busy with Thanksgiving prep distractions, I don't think we realized how scary that really was until we couldn't avoid it. It's safe to say we were all worried about him, but since there was really nothing productive we could do with the worry, we all just kept trucking along the best we could. Looking back, I was nervous about letting our families see me be worried, but I think it was my way of attempting to prevent them from being even more worried and I know that's nonsense and everyone who loves us is going to worry regardless but I hate the idea of adding to the worry train.

The rug really ties the room together.

Joey played football with us! And look at our new pillow! So cute!

Try as we might, this locomotive of anxiety cannot be stopped. It initiated our decision to officially cancel the vacation we had been planning for mid-December. We've talked about this trip for years and finally bit the bullet on tickets this summer. We knew there was a possibility we'd have to make adjustments (like planning time for naps), but as the months went on and as the MELD went up, we realized that as much as it stinks to be the reason everyone's vacation plans have to change, we can't predict how many Thanksgiving-like days Joey will have while we're traveling. And there's always the weight of The Call looming over us. Now, we're trying to look forward to the new liver celebration trip we'll take once Joey's Bubble Boy restrictions are lifted post-transplant.

When we were dating, I used to take pictures of Joey sleeping in random places all over campus. I wasn't doing it to be mean-- it was just mind-boggling to me that he could literally fall asleep anywhere. After we got married, I'd be annoyed when he'd fall asleep on the couch and I couldn't wake him to join me in our bedroom. I used to get mad at Joey for falling asleep whenever we'd visit my family in Illinois (once or twice he even started dozing off at whatever restaurant we were at). We can be a rowdy bunch and I'm certain part of it was because we wore him out with our energy, but I also now realize that he just couldn't help it. 

He spent hours at the table like this the day after Thanksgiving. Even our terrible Hanabi playing couldn't disturb his slumber. 

I'm happy to report that by Saturday, his energy and appetite were back to normal (for him). We're waiting to hear back on the most recent blood work, but based on Joey's calculations, it'll probably be lower. He also started taking some water pills to help with the swelling and so far there appears to be some improvement.

I'm unhappy to report that I will snap at anyone who looks at me the wrong way. I am mentally spent, my priorities have changed, and I will most definitely forget to ask you about how your day is going. Please try to tell me anyway.

Joey's been getting into Perlers for the heck of it. He made two livers.

Hehehehehe 

Also, we have a multitude of people willing to be living donors. THIS IS INCONCEIVABLE. I can think of three people that have initiated testing of some kind, two that have applied for consideration, and many others that have verbally offered. Thank you. You know that's willingly cutting out part of a vital organ, right? Incredible. 

And now, a word from our spoonie: I'm hesitant to let people know how bad I feel all the time. Upbeat people are easier to support. If there's one good thing to say, it's that the diuretics have helped my mobility. I was able to get my pants on easier today.