Surprises!

First, we are HOME! We got the green light from Dr. Humar to head back to Charlotte until our next appointment on July 19th. We weren’t expecting this and loved the idea of sleeping in our own bed so much that we decided to pack our bags and make a quick escape without telling anyone. We are enjoying the sound of cicadas, walking SalTak around our own block and the summer heat. I have to be extra careful about germs/being out in public since I’m immunosuppressed but look forward to slowly making my way back into the land of the living. I can’t wait to see and thank everyone for holding us so closely during all of this. Please continue to pray. The first three months are the most critical time for acceptance and we will continue to make regular trips up to Pittsburgh for the remainder of the year for various check ups. I am feeling well and notice slight improvements in my health every day.

Second, but more importantly, Vince proposed to Mercedes!!! He surprised her on Tuesday and we couldn’t be more thrilled! I know Vince knew he wanted to marry her long before the surgery but he would have been a damn fool to not have put a ring on that finger after the way she loved and cared for him throughout this process. They walked through it in lock step and we all loved watching them grow even more in love because of that. They’re a perfect match. It’s a crying shame I took so much of Vince’s liver as he deserves to be drowning in bottles of champagne in honor of this occasion. I have no doubt he’ll be able to make up for lost time by the time wedding bells are ringing.

He is building a palace

The weather was perfect and I felt well enough for an outing so Jordy and I decided to take a little field trip. We dropped SalTak off at Camp Bow Wow and drove an hour and half up the road to see Fallingwater, the famous house designed by Frank Lloyd Wright, built over a series of waterfalls in the middle of nowhere Pennsylvania. I decided to post tonight because I fear that if I wait one moment longer I’ll get overwhelmed by all the things I want to share and never post anything at all. I’m bursting at the seams to convey to the universe what the past three weeks have been like for me and simultaneously have no desire to talk about it at all because I know I’ll just get frustrated with myself for not articulating it well enough to really allow people to understand. It’s a fruitless pursuit! So, in order to just break the ice and my silence, I’d like to begin this post by talking about Frank Lloyd Wright and this house he designed. The grounds, the interior, the furnishings, the colors, the smells, the sounds of the giant waterfall under your feet in the living room- all of it was completely mesmerizing. It delighted all my senses and since I feel like I’m living in an entirely new body, you can imagine how thrilling this was for me. If you read my first post, you’ll know that I now own a vintage pair of leather slippers from Kaufmann’s, a famous Pittsburgh department store that no longer exists. Well, today we learned this house was commissioned by the uber wealthy Kaufmann family in 1936 and marks the turning point in Wright’s career after it graced the cover of Time Magazine upon its completion. J and I both agreed that it would be worth a flight to Pittsburgh and an hour and a half drive outside of the city just to visit this place. I won’t bore you with the details of each room, each well appointed fireplace, each window and door, but I assure you it was all just a feast for the eyes and we vowed to begin sketching ideas for our one-day house the moment we walked out.

Speaking of walking, I am still at a snail’s pace and my posture looks like that of an 80 year old’s with severe osteoporosis. I have to wear this binder thing around my core (think girdle) anytime I’m active and it makes for a very awkward-looking gait. The nerves in my stomach are starting to come back online, which is both good and bad, but the severe internal pain is finally waining. I think my scar is very cool as I have always been a fan of scars. I’m an emotional mess 99% of the time thanks to the heavy dose of steroids and immunosuppressants I’m on and if you need an example of how bad it is, you can ask Jordy about the amount of tears I shed when I watched Rory tell her college boyfriend goodbye when he moved to London for a year (Gilmore Girls is my guilty pleasure in recovery). I cannot even bear to watch any of the videos people took of me after the surgery…not because of how pathetic I looked but because of how powerful they are for me. Even looking at pictures of things from those first few days sends me into complete hysterics. I was warned by some people who had gone before me in the liver transplant world that this would be a highly emotional experience, but I had no idea it would be quite so intense. I looked at that waterfall today and have never felt so connected to something in nature. The Prograff has balanced out for the most part. Those were some tough days. For a while there, my arms were my biggest complaint. It felt like they’d been run over by 18 wheelers. I’ve still got two tubes coming out of my abdomen but I can finally take showers without having to get Saran Wrapped first. I love UPMC with all of my heart and don’t even mind going back for my follow up appointments. This is coming from someone who has legitimate PTSD and hates hospitals with a fiery passion.

I have a lot of healing to do and it has been harder than I even imagined it would be at times. I have gotten frustrated and bitter and short tempered and sad. I have worried extensively about the idea of having to take so much medicine to stay alive and hate the idea of having to deal with the side effects of these medications for the rest of my life. But then I think about those pictures of my old liver, Creature #7, and things come back into focus. And I think about how I’m alive because of Vince. I think about how 60% of his perfectly beautiful liver is now all hooked up and WORKING inside of my body. And I think about how miraculous and wonderful this whole thing has been and how the Lord has been preparing me for this my entire life. I think about how he was preparing Jordy’s heart for this long before I even met him. I do not know why or how or what this is for and fully understand that I might never know this side of Glory, but I know it is not all for naught. In two years I have faced two major physical, psychological and spiritual blows. The first, losing June, made me so weak and so fearful that I worried I would not have the strength to endure another battle in my body. I felt so ill equipped going into this. I didn’t have any fight left in me. What I learned, much to my surprise and delight, is that I didn’t need any fight for this battle. It was fine to be weak. All I had to do was accept the gift of life from someone who was giving it to me. I just had to be open to taking it, even if it caused me pain. Fighting was the exact opposite thing my body needed to do. Remember, I’m on enough immunosuppressants to shut down the disease fighting ability of a herd of lions right now. It took me a while to understand why the doctors need my immune system to STOP working, so let me explain. Our bodies know when something foreign has invaded it. Our immune systems are smart and go after anything that doesn’t belong with the intention of killing it so it doesn’t kill us. This is usually a wonderful thing. In the case of transplants, it’s not such a good thing. We need my immune system to stop working so that it won’t see Vince’s liver as a threat. We need Vince’s liver to enter my body in peace- no fighting, no attacks. This entire physical process has been about the need for my body to fully and completely surrender. Even if it hurts every cell in my body and causes me to cry waterfalls of tears. Even if it meant I had to be cut open and torn apart. The only thing I’ve had to ask my body to do is say thank you, and allow the new liver to do its thing, knowing that it would bring me new life, knowing that it was purposeful even when it hurt. Easier said than done, I assure you, but I love meditating on this and find it far more applicable to my life and faith than anything that promotes being strong. It feels far more authentic for me to admit that I am weaker than ever but better for it than to lie and say I got through this by fighting some kind of good fight.

With that in mind, I’d like to end with a couple of verses that have scrolled across my brain many, many times in the past few weeks:

2 Corinthians 12:9-10

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

And I would be remiss to not also include one of my favorite quotes from C.S. Lewis after today’s house tour:

“Imagine yourself as a living house. God comes in to rebuild that house. At first, perhaps, you can understand what He is doing. He is getting the drains right and stopping the leaks in the roof and so on; you knew that those jobs needed doing and so you are not surprised. But presently He starts knocking the house about in a way that hurts abominably and does not seem to make any sense. What on earth is He up to? The explanation is that He is building quite a different house from the one you thought of – throwing out a new wing here, putting on an extra floor there, running up towers, making courtyards. You thought you were being made into a decent little cottage: but He is building a palace. He intends to come and live in it Himself.”

(C. S. Lewis, Mere Christianity, New York: MacMillan Co., 1960, p. 160)

Thursday Night Prayer Request

One of the weirdest parts of receiving a new liver is that each body dials in its anti-rejection medicine differently.

In keeping with the spirit of the fantastic care we’ve received from the first day we came to Pittsburgh, Sally’s transplant coordinator called this afternoon to let us know that one of her medicines was reading too high. They’d checked twice with the lab and want Sally to hold off on the medication for a day and a half and pick back up with a half dose Sunday. We head back in for another appointment Monday.

We love specific prayers. We love bringing specific, named problems before the Lord.

We’d love for all of you who follow this who would like to join us to spend a few minutes this evening praying that Sally feels better, because having too much Prograff in your system is just like having too much of any drug. She’s been feeling unnerved and weak all day, and the transplant coordinator said that the symptoms she described were in line with having too much of this in her blood.

They’ll get her dialed in, we have no doubt. This is all a part of figuring out how to host a new liver. But in the meantime, please just pray that Sally get’s some relief from these weird feelings she’s having.

Thursday, June 13th

Everything’s ok. We met with Dr. Humar this morning and everything looks great. Sally still has a blue wire coming out of her chest (think aux chord) that we hook up to a doppler sensor that sits right next to the main artery going into her liver. When we plug it in there’s this lovely, reassuring whoosh that allows us to hear the rate at which blood is flowing to the new, Model-V UltraLiver.

He may take the chord out Monday. This is called serious progress.

All of Sally’s liver numbers look great, and with the exception of magnesium, so do the rest of her blood indicators.

So we’re hanging out in the hospital on a rainy Pittsburgh morning and she’s getting an IV dose which should take care of business.

She’s sound asleep on this hospital bed next to me and in about 45 minutes we’re going to leave here and go eat breakfast at one of our favorite restaurants in the world.

And then we’ll keep resting, maybe walk SalTak in the glory that is Frick Park, watch a romcom and later tonight pull for the Warriors .

Vince and Mercedes are home in South Carolina, Katie leaves today to get ready for her upcoming trip to Cuba.

All this to say that things are calm and and that Sally is doing wonderfully.

Saturday – 10:28am

Sally’s had an IV line going into her neck since 7:30am last Thursday. Initially it ran all the way through her heart, doing something important. They removed that after surgery in the ICU and I was amazed at how long the cord was, it was every bit of four feet.

Three lines have remained in her neck since then and have been used to inject medicine, draw blood and keep Sally from getting poked by a needle again (I’ll include a photo of her wrists that will show you just how hard of a beat down she’s been through).

To say that these neck IV lines are important would be an understatement, they’ve been her lifeline, her security blanket and the portal in which the nurses and doctors can work in seconds if they’ve needed to help her, and they have.

But they are out. Just a few minutes ago two nurses came in and carefully removed them. She has a few stitches in her neck and a dressing, but the IV is gone.

In case you haven’t put two and two together… this means Sally is being discharged!

We’re still waiting for Dr. Humar to come put his eyeballs on her and give the green light. All the nurses are coming to say goodbye to their favorite patient, and I’ve practiced changing a dressing that we’ll have to keep up with over the next two to three months.

It’s actually a bit unnerving. It’s hard to leave the safety of having a full team watching Sally’s every move and vital sign, knowing that there’s an operating room and incredible surgeons just a few floors away. But that’s why we did this. That’s why Sally made this choice and went through all this torture.

To get better.

It’s hard to even imagine that’s what’s going to happen because you kind of get used to getting your butt kicked once it starts happening nonstop. But we’ve been saying that there’s light at the edge of this storm, and the Lord has made his promise to not give us more than we can handle, and we’ve dreamed of a life without managing an incredibly difficult, hard to understand autoimmune disease.

So here we are, looking down the road. The old liver in the rear view mirror, a new life ahead.

And it’s never felt more like anything is possible than it does right now.

She made it, she made it, she made it, she made it, she made it!