"So if someone could just hand me the cake..."

Surprise! I have a new post to share! And it's only been a week since my last one! It's a Christmas miracle! But I can't actually take credit for this. 

I think it's safe to assume that if you're reading this, you know Joey ended up getting a liver from a deceased donor. Living donation is an option for liver transplant and I can think of at least 8 different people that offered to be donors for us-- many of those did preliminary testing and two of them made it to the very last steps. 

Anyway, one of the two living donor candidates that made it to the last steps was Whitney. Whitney has been mentioned a few times in various posts and, as a loyal encourager/supporter/friend of ours, was disappointed at where the last blog ended. She knows what comes next, but has been excited to read about it anyway. I assured her that I would definitely be including the diarrhea close call/the time I finally cried. Then I asked if she'd like to write something from her perspective considering her family was physically the closest to us during all of this (just down the street, baybee) and she had insider knowledge on the living donation piece of this story. I didn't give a deadline or any other specifics and she said, "Sure. I can work on something this week."

She sent me her thoughts THE NEXT DAY. I added the pictures, but the following words are hers (with one exception at the end).

I’m Whitney. My husband Justin and I have been Katie and Joey’s friends for the past 7ish years. We’ve gone through hard church things, hard job things, the birth of my children, and generally lots of life challenges since we met. Right now we live down the street from each other.

The Nicks had talked about Joey’s increasing liver problems with some frequency since the start of the year, but the seriousness of liver failure only began to seem real (to me) sometime in late summer. We were all hanging out in the backyard and I noticed Joey was yellow. Actually physically yellow. I had never seen anything like that before.

One night, they told us Joey got on the liver transplant list. They had no expectations of getting a living donor but when they mentioned Joey’s blood type, I knew I matched. When they left, Justin and I talked a little bit about me maybe getting tested to be a donor; then Joey got a call a couple days later for a deceased donor and we thought, phew, they don’t need me after all. But then that surgery was cancelled.

And then no more calls came for a time. Meanwhile, Joey got yellower, sicker, puffier, and sadder.

I decided to fill out the application to be a donor.

I remember, they never cried during any of it. Not that we saw, anyway. Joey never expressed fear or sadness, just exhaustion from constantly feeling bad. They just wanted it to be over. I cried so many times talking to them while they remained stoic. I was sure they rolled their eyes when I came over: “here comes Whitney again, crying about OUR problems.”

Joey had a couple more devastating transplant cancellations after that. I vividly remember stopping by one night, after a cancelled surgery. Katie let me in, Lauren was on one couch, and Joey was on the “sick bed.” He looked at me, and I held his hand. It was quiet for just a moment, and I remember feeling so. incredibly. sad. And also briefly thinking, “oh. weird. I’m holding hands with Joey.”

With each canceled transplant the likelihood of me donating my own liver increased. Because through all of this, my donor application was slowly and steadily moving forward. My body was checking all the boxes to be a match for Joey, and with that came the looming possibility of major surgery and most pressingly, the need for someone to care for my children while I recovered for three months. That was the hardest for me… my babies… I wouldn’t be able to pick up my one year old, and she was too young to understand why.

Christmas Eve 2021

So about being a living donor. Katie wanted me to share a little about that process.

I don’t remember the names/roles of everyone I talked too, because there were a lot. As a living donor, I had a completely separate team from Joey.

First, I got a call from a donor coordinator, outlining what to expect. The process of approving me would take a couple months between appointments and test results, etc.

Second, a quick blood draw confirming… something.

Third, a day of scans. CT scan then MRI. Sarah A drove me to these appointments. First was the CT scan and that was uneventful. Next was MRI, and that was scary. They gave me morphine to dilate something inside me; it made me nauseous. I remember thinking “why would people WANT to take this drug?!” The nurse stood on one side with my arm tucked into his. He had a bandana on his head and wore a necklace. He looked like a “cool” nurse and seemed like he’d prob be a hit with women. I thought this to myself, as I lay weighted down under those vests and a positioning tray, feeling perilously close to puking and ruining everything. I spent the next hour intensely nauseous, burping literally nonstop, and fighting waves of panic at my immobility and discomfort and closeness of the machine around me.

When I finished with the MRI, the radiologist said they needed me back in the CT room to rescan something. Cue more internal panicking. But it turned out when they had said “take a deep breath and hold” I had taken SUCH a deep breath that I ruined the CT image and that radiologist said I had the largest lung capacity he’d ever seen. Hahaha. When I follow directions, I FOLLOW DIRECTIONS. Boy howdy.

After that last scan I had a meeting with a doctor who was also on Joey’s transplant team. He evaluated my scans. He said it’d been hard to find a good liver because of Joey’s “small frame.” He said my liver looked good and showed me my scans and I asked a lot of questions about the lines of dissection and anatomy. He told me, “You ask a lot more questions than usual.” Then a longer and scarier talk about the actual surgery and recovery with some other person on the donor team. Justin brought me home. He wanted to know about the day; I had a hard time talking about it.

A month later, my next appointment was to have blood drawn and meet with 3-4 other donor team members in a row. The night before my appointments, Katie and Joey got another call for a transplant from a deceased donor. They went to the hospital that night. My blood draw was scheduled for 8am the next day, so I went just in case (same hospital, but a different wing from where Joey and Katie prepping for surgery). While I was waiting to get poked, the donor coordinator called and said I didn’t HAVE to get my blood drawn if I didn’t want to, because Joey’s surgery actually had a scheduled time that morning.

But by that point, Joey had already had 3-4 canceled transplants. So… I kept my appointments. I felt increasing nerves as I went through the rest of the morning. Katie texted me when they wheeled Joey to the OR. I kept at it with the hematologist, psychologist, and social worker. It was during that last meeting of the morning, while Joey was supposedly already under the knife getting his new liver, that Katie texted me… “it was canceled.”

I burst into tears right then and there. Social worker stepped out to confirm.

The devastation was almost too much. I had just barely allowed myself to hope that I WOULDN’T be doing this very scary thing, that I WOULDN’T be cut open for my friend, and I WOULDN’T be unable to hold my babies for months, to have the sudden reality that now MY liver might be the only hope to save him in time… for those barely thought hopes to come crashing down whilst knowing it was THAT MUCH WORSE FOR THEM because Joey was DYING and they got his life pulled out from under them AGAIN….

The social worker came back. Said we needed to talk about scheduling my surgery after all. Somewhere in the transplant wing of the hospital, Katie and Joey were actively reeling from this letdown. I texted Katie and we met in the lobby. Hugged. Again, she didn’t cry.

A week passed, and I found out I’d passed all my tests and evaluations and appointments. Feb 21 or 28 would be the surgery date, depending on a couple more things. My appointments were done, and now we waited. I started looking for flights for my mom to come up, and began some serious freezer meal prep. Once I remember dropping off food for the Nicks too and seeing Joey from the back, and noticing his back was unevenly lumpy in the weirdest places.

BUT THEN GUYS.

About three weeks before my/his transplant was scheduled, Joey got another call. Another deceased donor… AND THIS ONE WENT THROUGH. PRAISE GOD.

Joey had a new liver and was starting a whole new journey post-transplant. My journey as a living donor had officially ended.

And that’s all from me, folks.

March 2022- Joey made espresso.

But a few random thoughts—when my liver was no longer needed, I had a funny “oh nuts” realization—I had been looking forward to a cool scar and no body pressure on my family beach vacation that summer. I could be lumpy anywhere I dang well liked because I’d just given my liver to someone thank you so if someone could just hand me the cake…. Oh well.

Also shout out to Lauren for being a chill and thoroughly enjoyable person to be around during that first week after Joey’s transplant. She hung at my house one day while Katie was in the hospital and we came up with ideas for a care package and then we shopped for easy hospital food for Katie. Grown up lunchables.

And now, a word from our Lauren: I'm thankful for Whitney and Houston Justin and their hospitality from the moment I landed at the airport in Michigan. I was able to enjoy meals with them, drink espresso, nap on their very comfortable couch, and learn Katie makes PB & J sandwiches weird now.