What it’s like to wait for a liver transplant, part 2

This week has been not my favorite maybe. Of all the transplant weeks, it might have been the hardest so far, and also the most uplifting. It’s a toss-up. Here’s some things you should know about transplants. First, the way you get one is to be so sick that without one, you would die. Essentially, your doctor recognizes that something is not right, and will never be right again no matter what medications you are prescribed or dietary changes you make, or weight you lose. There is something irrevocably broken, and the only way to fix it is to get a new one, like an incredibly costly and difficult to find washing machine, your organ sits uselessly in your body, making things worse and worse, until whatever part is on backorder becomes available. But, in the meantime, you actively progress towards death as if you will never be better again. You go through an extensive battery of testing to make sure that you are healthy enough to receive a new organ, and then, when you reach a certain level of sick, you are placed on the transplant list, and thus begins the unforgivable optimism that someone else will die and you will be able to start your life all over through the gift of their death and organ donation. It’s not a process for the faint of heart. 

The second thing you need to know is that not everyone gets a transplant. There are hundreds of people every year who, because the stars don’t align just right, die while they are waiting. It’s not a shoe store. There has to be a near miraculous alignment of circumstances and antibodies and location and so many other things for a transplant to happen. It’s not a guarantee. The surgeons do everything they can, but they cannot pull a liver out of thin air. 

The third thing you need to know is that not everyone with liver cirrhosis “Drank themselves to death.” Sometimes you get liver cirrhosis from bad genes, or blood clots, or hepatitis of all different kinds, or autoimmune disorders, or (like my dad and perhaps most commonly) non-alcoholic fatty liver disease. Tell me all these people with cirrhosis “did it to themselves because of their bad choices” and I will educate you into feeling very, very small while silently cursing the day you were born.

The fourth thing you need to know is that getting a transplant is not the end of an illness. It is the beginning of a new one. I hear people say sometimes that once my dad has his transplant his life will start over, and he will feel like a new man, and we won’t have to be afraid anymore. In a lot of ways this is true. But in other ways, there will be new things taking the place of old worries. Your immune system has to be essentially turned off in order for you to receive a transplant. So every little cough someone has, every runny nose, every seemingly annoying but otherwise insignificant stomach bug matters to me. Any one of those things happening to him could mean that we can’t accept a transplant because, once he is in the OR and they “turn off” his immunity, any one of those things could become deadly. People think I “live in fear” and that’s OK. That’s their right. But it’s not their dad, so…yeah. Tell me how you would feel if you knew your dad was actively dying before your eyes, day by day, pound by pound of muscle wasted, and the only way to save him was for someone else to die, but even if they do die and donate their liver, if he has a cold we can’t accept it, and then you tell me how to not be afraid of a cold. I’ll wait…that’s what I thought Karen. Moving on.

Anyway, the organ my dad needs is a liver. So since his liver is essentially dead, that means that all the things a liver needs to do are not currently being done in his body. He can’t process medications. A few weeks ago he took an as-needed muscle relaxer and we ended up in the hospital with him not knowing his name or what year it was because his body just can’t process it. He has no platelets. He gets nose bleeds sometimes that last for an hour because his liver can’t give him what he needs to make the platelets to stop it. He can’t process sugar and protein and all the other nutritional particles we need to maintain healthy weights and muscles and brain function, so most of the time he actively loses weight no matter what he eats. His fluids shift in and out of their assigned compartments, and so once each week on Fridays, he goes for a paracentesis where a needle is inserted into his abdomen and 6-8 liters of fluid is drained out so that he can breathe again without his lungs squished and he can eat little bits more without his stomach being squished and he can walk without the center of gravity being so shifted by the heaviness of the fluid accumulation. His body can’t filter the poisons in his blood, and so sometimes those poisons attack his brain and he can’t think straight or concentrate. Or his muscles twitch for no reason. Or he falls asleep after just sitting for a few minutes. And then there can come, out of nowhere, from something as simple as mild dehydration, the thing he dreads most, encephalopathy. This is when he becomes so confused that his personality changes. He can’t interact with us like he normally would. He doesn’t know where he is or when it is. He can’t hold his own eyes open or sometimes even stand on his own. Last time this happened my brother and I somehow managed to get him down the stairs and into the car, and after 2 days of detox-ing the poisons he was back to “normal”, whatever that means for a transplant patient. 

In Priestdaddy, Patricia Lockwood gives the most beautiful description of such a sickness. She says, “The sickness in him, healthy in itself, flourishing, like a sunflower that turns its head to something we can’t see. It grows up on a resilient stalk and does not leave him. It is happening so fast, the footage speeds up, it rustles taller and taller.” This is what’s happening to my dad. 

Basically, getting a transplant is the only shot he has at fixing any of this. Nothing else can be done. What is broken must be replaced, or he will die. Since September 2020, we have been told that he was at the top of the list for his blood type. Since September he has gone for weekly COVID tests and weekly lab tests. We have wondered if every phone call would be the one to say we were ready for transplant surgery. Which comes with its own mixture of fear and dread and elation, given that my mom died right after a routine surgery from complications. I had all but given up hope that we would ever get that call. But this past week, we did.

Thursday morning, his transplant coordinator called and said we had “an offer.” As if we are buying a house. What people who don’t need organs can’t understand is that you have to be a little picky. The transplant team is picky on our behalf. You can’t accept just any organ. It has to be the right shape and size for the body. It has to be the right blood type. It has to be the right amount of time since the donor has died in order for the organ to function correctly once it has been transplanted. And the recipient of the transplant has to be free of any sign of infection, and so you get tested for literally everything.

We go to the hospital and they have him shower, get a chest x-ray to rule out pneumonia, get a urine culture to rule out infection there. Swab for COVID 19. Swab for MRSA. Lots and lots of blood tests. Nothing to eat or drink. And you sit in a little room in pre-op and struggle between excitement, fear, trying not to get your hopes raised too high just in case. They told us surgery would be around 4 pm, and we got to the hospital around 10, so it was a long day. Around 2 pm , the transplant surgeon came to see me and explain some unique circumstances about our donor. Because of these circumstances, we would not know until right around 4 if the organ was a viable option or not, but we would prep as if we were going to surgery until we found otherwise because, if it was the right organ at the right time, things would move quickly. 

Since the COVID 19 restrictions are in place, he could only have one visitor with him, so that was me. Since it was after 3 and surgery could happen any time, I got out my phone and had him FaceTime Other Half, Mary Ann and Benjamin Button, Uncle Jesse, Mamaw, John Wayne and Helen Keller. It was Mary Ann’s birthday on Thursday, and she told him they would be sharing a birthday now—his because it would be his second birth, a new chance at life. Then I fought tears as he told me to hand him his phone because he wanted to listen to a song someone from work sent him last week. “Goodness of God”, the Cece Winans version. And I cried the whole time it played while he cried the whole time it played, and we wondered about the goodness of God. The goodness of one who could allow such suffering but also provide a means of redemption. And as I wondered about my struggles of late on if I accepted this belief in the goodness or not. 

I fought the urge to crawl up in his bed with him and sit, as if I were the one who needed someone to be strong for me instead of me being strong for him. My Friend has always told me that people just need hope, because if they don’t have hope, they give up. So I’m trying to be hopeful in the midst of my cynicism and worry. Earlier in the day, My Friend had told me it was like in many ways I was going to be reborn. New job, new beginnings, now with the new sensation of no longer worrying about if my dad would get a transplant in time. And I wondered about the goodness of starting over after so much loss. At allowing myself to reach for hope one more time after weeks of feeling utterly without it. 

Around 430, the surgeon came to tell us the liver could not be used. He was matter of fact, but with his shoulders hanging a little lower and only brief flickers of eye contact, and admission that he knew what it would cost us to hear the news. Watching the hope drain out of my dad’s face in those moments was maybe the worst thing I’ve ever seen. I waited until he fell asleep, and then I went down to Panera and got him a Kitchen Sink cookie and a sweet tea (diabetes be damned, the liver will kill him first anyway), and sat for a few minutes to make sure I wasn’t going to cry when I went back in his room. 

He finished his snack, we waited for discharge (2 hours later), and I made the longest drive back home of my life, the 40 minutes seeming like 4 hours of silence with only Miranda Lambert in the background, and my dad saying not a word.

In a way, it gave us hope. Before we thought the call would never come, but now we know it can. It also gave us the greatest disappointment of all the rest so far. People think that medicine is about making patients feel better, and it is. But the first rule of medicine is “Do no harm.” Doing harm is in the eye of the beholder. Certainly the transplant team was saving us from possible harm later by making sure that we didn’t get a liver that would not work or would bring complications or worsening sickness. And of course, we are told many times throughout the wait that there will be times you go in and they send you back home because it’s just not the right one. We knew this could happen. But no one talks about the psychological harm of being so close to the end of an exhausting journey and then having the bottom fall out. I wondered, is it worse to have false hope or no hope? And then I felt selfish for the thought because it’s not false hope. It just plain hope. It’s the anger and hopelessness calling it false. 

So, this is where we are, still in the middle of all the same things, no worse off, and no better. Exhausted but still hoping. And thankful for everything my dad’s transplant team is doing to try and make sure that he gets a second chance. 

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