Liver La Vida Loca

Let's get right to it.

Joey needs a new liver.

This is not new information to us. Well, it kind of is, but since Joey was diagnosed with Primary Sclerosing Cholangitis (PSC) as a teenager (around the same time as his Ulcerative Colitis diagnosis), he's known a transplant was likely in his future. What we didn't realize was that the future would feel so... now-ish.

Sometime I'll have him help me document his *~ChRoniC IlLnESs JoUrnEy~* but in the meantime, I'm going to get you caught up. For more information about what PSC is go here.

Within the last year or so, Joey began noticing new symptoms that we could only assume were related to his liver. His eyes have been getting more and more yellow, he was feeling more fatigued than usual, and in July, his legs started swelling. The progression of Joey's illness was becoming a regular conversation between us and friends. We'd ponder, I wonder how much worse it's going to get before he can be considered for a transplant. We reached out to his hepatologist who ordered a fresh round of bloodwork. 

On July 19, he called Joey to initiate the discussion about getting a transplant and it was the first time in months that we felt a glimmer of hope for the future. Over the new few weeks, Joey had appointments with a social worker, psychologist, nutritionist, transplant surgeon, and the dentist. He also had more bloodwork (they took 19 vials!), an MRI, a chest x-ray, CT scan, an arterial blood gas, and an echocardiogram. I checked out approximately 10 books from the library and never stopped scrolling forums and websites for all the information I could possibly get about the transplant process. 

Most of those evaluation procedures took place on one day.

Less than two months later, on September 17, Joey was officially placed on the United Network for Organ Sharing waiting list for a liver. In the pages and pages I read and scrolled through, we had every reason to believe that the process of just getting listed would easily take several months. There are many pieces of the puzzle (family to fly out last minute for the final support meeting with social worker, coworkers being willing to make adjustments to accommodate how fast things were moving, jobs that allowed us to take time off for all the appointments, a transplant team that answered all our questions and reached out with updates to keep us in the loop, etc.) here to be grateful for. Especially in Covid times when nearly every aspect of the world is backed up, out of stock, or short-staffed, to be listed that quickly feels like a miracle itself.

And then three days later (I repeat- three days later), Joey got an offer call. 

Because this day would create a split in our lives (before transplant vs. after transplant), I wanted to take a last 'before transplant normal' picture of us together before we got in the car to drive downtown.

It's almost been two weeks and we're still exhausted from that day. The liver ended up not being viable so we're still waiting. I'll chronicle the few days between the official listing and the offer in different post because I absolutely want to remember the ups and downs and the excruciating minutiae of those 6ish hours between "The Call" and being sent home.

Many of you seemed to like the Louisville blog (I liked it too!) so here we go again.