Do you know about Pavlov? The scientist who did the research with the bell and the dogs? He looked at conditioned responses (ones that we are taught) vs. unconditioned responses (ones that are automatic). He would ring a bell, and then give a treat to the dog after every bell, and he measured their saliva as an indicator of what they expected would happen. Show them a treat, lots of saliva— that response is unconditioned. It just happens. When they knew they were about to have food, saliva production increased. Then, he rang a bell, followed by giving them a treat. Over time, with just the sound of the bell, the production of saliva increased even without the dog seeing any food. This was a conditioned response. They learned over time what they should expect.
Expectations are learned behaviors. I was thinking that over the past 2 years, this is what has happened to me. I have become Pavlov’s dog. Instead of saliva and dog treats and bells, my pattern looked like this: love something or someone —> feel happy —> lose person or thing that makes me happy. Maybe this started even more than 2 years ago, but 2 years ago is when I finally stopped expecting things to be different and accepted that it was likely that the bad would always outweigh the good. I told this to my therapist. She says, “Those are some deep pathways wired into your brain now. It will take a lot of conscious effort to undo it. You live like you’re waiting for God to smash you with a hammer.” She was right. She is right, I mean. I’m still firmly in the midst of trying to overcome these thought patterns.
I haven’t been talking very much lately, not on here and not to anyone else other than a few close friends (few meaning literally 3 people). I think because of Pavlov. We went for a total of 5 possible liver transplants before call number 6 was “the one.” After the first 3, by number 4 we thought surely he wouldn’t be sent home again. But even then, I refused to believe he was going to have surgery and get better until we knew one hundred percent because my learned response taught me that to hope was painful.
I told my therapist that I picture hope as a bubble, that can survive only if I’m very still and my palm is flat and my fingers don’t move, resting in my hand while I hold my breath. There’s a scripture (Hebrews 10:23) that says, “Let us hold resolutely to the hope we have professed, for he who promised is faithful.” The thought of holding resolutely to any form of hope seemed irresponsible to me, the very definition of insanity (doing the same thing over and over again yet expecting different results), and I just couldn’t do it anymore. But what choice did we have? It was either continue to hope or accept that death would come soon. There was no in-between. So I stood, open palm, fingers outstretched, the hope-bubble resting undisturbed on my anxious, sweaty skin, waiting for God to smash me with a hammer.
Liver number 5 was a little different. Everything moved so quickly, and the team was so reassuring, convinced that this would be the one. He went down to pre-op, was meeting with anesthesia. Everything was set. My sister and I went to the cafeteria to wait for news. And then, ten minutes before his surgery was scheduled to begin, someone called from the surgical waiting room and said surgery is cancelled, he’s being discharged, come pick him up. This one was the last straw for me, I think. And for my dad too. It was such a crushing defeat. The one that hurt more than all the rest.
The next day, he wanted to run errands which I thought was a terrible idea because germs and cancelled paracentesis=poor center of gravity with almost guaranteed falls plus no platelets to stop the bleeding if you do fall, plus exhaustion, plus can’t eat. This is what liver failure looks like. But I didn’t have the heart to tell him no because he needed some type of diversion. So we went to an antique mall, and bought a fish at Pet Smart, and went to look at plants at home depot, and had brunch at Famous Toastery. I was in a terrible mood the whole time, just as I had been the weekend before my mom died when she and I went to get our nails done, and I was mad at myself that I wasn’t taking the time to enjoy this outing with my dad, while at the same time I felt that the weight of sadness was too heavy to allow any joy to creep in. He was exhausted by the time he got home, and most of the things he wanted to find they didn’t have at any of the stores, and so even the routine shopping trip felt disappointing.
By Sunday, I couldn’t get it together. I was angry and heartbroken and emotionally exhausted, and I just couldn’t function anymore. I would burst into tears and couldn’t make them stop. I said horrible things to my family, things that made them worried and sad. If I’m being honest, I wished to go to bed, and never wake up just so I wouldn’t have this suffocating pain to carry anymore because I was at the end of myself, but I still needed to be at work at 630 in the morning, pretending I was holding it together rather than barely holding on.
Monday morning, by the time I woke up at 530 to get ready for work, we had another liver. I refused to even consider that this was it. I refused to encourage my dad at all because I wanted to protect him from any more false hope. I didn’t think he or I could take it anymore. I went to work like normal, and Uncle Jesse stayed with him at the hospital. After work, I went to see my therapist, and then went to the hospital.
They told us that his liver was being flown in from Indianapolis. This was a little shocking to me because for some reason, in my head, I pictured that yes, probably my dad was sickest in the Southeast, but to process that he was sicker than all the people on the East coast and the Midwest, sick enough to have this liver flown to him, was an uncomfortable realization for me. He was tentatively hopeful, and made jokes that his liver was coming in like the guy from Weekend at Bernie’s. And then he checked the weather to make sure there were no storm fronts that might make a plane crash more likely. (Do you blame him at this point? I don’t). I got a text message from Helen Keller that said, “Do we think there’s going to be a plane crash?” And I smiled and told her I had the same thoughts. Only after I admitted this to Daddy did he tell me he had already googled the weather reports. Apparently there are several of Pavlov’s dogs in my family.
Around 10 pm, we were getting antsy. The liver was supposed to arrive at 8 pm, and if it seemed to be a good fit for him, then surgery would start at 11. Visiting hours were over at 10 and I was going to have to leave. I was worried that he would receive crushing news once again and he would have to hear it alone and I wouldn’t be able to even offer the gift of sitting in the suck with him. I didn’t want him to go through that alone. Not again.
Right before I was supposed to leave, the charge nurse came in. “Mr. Carpenter, I wanted to tell you personally. I have seen your name come up on our list so many times, and seen you have to leave, and every time I would pray for you. This time they sent me a message and said we’re good with this one. This is your liver.” Daddy shot both hands in the air and grinned from ear to ear. Surgery would be delayed, and instead of 11pm it would start at 3 am, but it was really going to happen this time.
I stayed until they took him down around 245. The nurse kindly overlooked the fact that I was in the room and didn’t make me leave. I kissed him bye in the hallway, and drove home for them to call me. Because of visiting restrictions, I couldn’t wait in the waiting room, but would instead have to come back at 8 am. Another nurse called me while I was on my way home. “I’ll be in the OR with him the whole time. I’m so glad I was on call. I’ve been on call several of the times we had to send him home, and I was overjoyed that today is his day. I’m going to make sure he has the best care possible.” She called me every hour with updates. The old liver is out, the new one is in, everything seems to be functioning well, we’ll be closing up soon.” In just 6 hours of surgery, my dad’s whole life was changed. It was saved.
When I went back to the hospital the next morning he was in ICU, still on a ventilator, with lines everywhere. I waited in the car for 30 minutes or so because right when I arrived was when the doctor called to say he was being moved to a room and would be getting settled there. When he told me that surgery went as smoothly as could be expected but we would watch to make sure he didn’t have problems with his kidneys or need to go back to the OR to have bleeding managed, I thanked him and hung up the phone, and then I cried for 15 solid minutes, my arms shaking as stress fell off of me in waves. I knew this grief was heavy, but I didn’t realize just how much it was taking out of me until the burden had been lifted. I immediately felt, for the first time in months, hope. It was as if, in one moment, I could feel again that maybe God hadn’t forgotten about me or my family. Maybe his plans contained some measure of good.
When I got upstairs, his nurse told me he’d received 13 units of blood in addition to plasma and platelets. He didn’t require any medications for his heart rate or blood pressure. And the black stuff in a suction container behind his bed (bile, secreted by the liver) was such a miracle to me, already coming in growing quantities.
By 8pm that night, he had the breathing tube removed. I had just gotten back to the hospital, rushing, afraid that he would have the tube removed and none of us would be there to help him process everything that had happened.
I grabbed his hand and said, “Hey, you did it. You’ve got a new liver.” And he started to cry. “Thank you Jesus,” he said. “God is so good to me.” This was enough to bring tears to my eyes on its own. Then he said, “I miss my wife.” I can’t even imagine how he felt going through something like this without her. “I did it for her,” he said. And we told him how proud she would be of his hanging on in the midst of crushing grief and terrible odds, choosing to stay and fight so that he would be there to take care of his family when no one would’ve blamed him for giving up and choosing palliative care instead of mustering the will to fight for his life after such a loss.
The way my dad has lived his life since my mom died. That is what it looks like to hold resolutely to the hope we have professed. That is what it looks like to say, “Though he slay me, yet will I trust him.” That is the very personification of, “The same spirit that raised Jesus Christ from the dead lives in me.”
By the next day he was sitting up in a chair eating jello and chicken broth. By day 2, he was on to advancing his diet and having invasive tubes removed. By day 3 he was out of the ICU and into a medical bed. The changes in him have been immediate. His color is better. He can eat without nausea for the first time in 2 years. He talks excitedly, a mile a minute. He’s looking forward to being able to travel more than 3 hours from home for the first time in 6 months. His mind is clear, no longer poisoned by the toxins that were building up for so long. He has a list of new medicines and a scar that proves he is a survivor. Hope seems a little less fragile now. It looks less like a bubble and more like a smiling face in a plaid shirt, walking laps around the nurses station because I told him I was worried about taking him home if he couldn’t get around well.
I don’t take lightly that someone else lost their life for my dad to receive his. I don’t take lightly that we have a long road ahead of us. But for the first time in a long time, the joy outweighs the fear, and that’s enough for now.
He rang the bell today, a thank you to the donor who provided a second chance, and then Other Half and I drove him home. The extended family put out signs, and made shirts, and there were colorful balloons flanking the entrance to his home, and he raised both hands in thankfulness and praise for the gift of a new beginning, life where before there was only death. Resurrection.
2 thoughts on “What it’s like to wait for a liver transplant, part 4”
No words Amanda just tears of joy for answered prayers! God is so good and He Is faithful. I love you💕
Just tears of joy as I read this aloud so Jack would be in the loop. I literally could not finish reading so Jack.did. Just overcome with such emotion with your Dads miracle and how your mom would be so happy. Love you guys and continued prayers from us both.
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