Liver Let Die

 A couple of notes before I begin

• This entire blog is primarily for me. I wanted a way to document the transplant experience and for some reason, it’s been easier to sit down and write about it on a public platform than journal about it privately and if people wanted to follow along, great! Otherwise, it was simply the most effective tool for me to process what we were/are experiencing. 

• Joey was surprised when I told him I wanted to work on recalling the ups and downs of the third offer call for my next post. “The transplant happened already,” he said. That’s true and we’re so unbelievably grateful to be at this point, but I don’t want to forget what it was like to get here.

• When talking about the transplant, I automatically speak like Joey and I are a unit. Our night was ruined. We got 5 offer calls. He suffered physical pain along with the mental struggles of worsening chronic illness, but we experienced liver failure and transplant together. We certainly have very different perspectives (after all, I wasn’t the one undergoing 9+ hour surgery to have an organ replaced), but what happened to him affected me. And by extension, what happened to us also impacted those who care about us. It’s the beauty of community I suppose.  

When last we saw our heroes, they were in the pit of despair after the devastating surgery cancellation on December 12th due to the O blood shortage.

It had been long enough since the call in December that we got back into a normal routine of This stinks. It's only going to get worse. He’s got a 50/50 chance of survival for the next three months. So be it. When the 3rd offer call came on January 19 at 4:00AM, we were shaken up all over again. It wasn’t the perfect offer. The liver tested positive for Hep C. Although not ideal, this would be manageable and we felt we couldn’t afford to be too picky. We were told the surgery would tentatively be scheduled for that evening. Joey was given a time to stop eating though I can’t recall exactly when it was.

This ended up being the longest, most exhausting experience we’ve been through. I daresay it took more out of me (physically, emotionally, etc.) than the actual transplant experience did. After our disappointment with the blood shortage, I naturally became a bit more pessimistic. When looking back at text messages from around this time, I saw that I had a feeling that THIS offer was the one because everything about it sucked so bad whereas the blood shortage offer was definitely too good to be true. Physically, I was feeling horrible with cramps and bloating myself, Joey was very hungry and tired of being told opposing things in quick succession, and we were both anxious about bringing Hep C into our lives via this new liver. Everything was a challenge during this call right down to finding the correct place to park (it was different for this call for some reason).

Many hours later while still waiting at home, we were informed of a hold up with the thoracic team. There was an issue matching the donor lungs to a recipient so the surgery would be delayed. They estimated the liver would arrive the following day, January 20, with a surgery time set for the afternoon. As mentioned in an earlier post, it was important for us to get Joey a haircut before surgery. As usual, we had let too much time pass between cuts so we scrambled to get an appointment. We ended up at a local Great Clips right before closing and told the hairdresser a short version of our saga and she wished us the best for the following day. At 8:00PM on the 19th, a coordinator called and said we had to be at the hospital by 11AM to be prepped. Joey would be taken to the OR at 5PM, then surgery would start at 6:00PM. Joey was allowed to eat again for a time, but was told he had to stop by 7:00AM the morning of the surgery.

The morning came, we drove to the hospital and waited to be prepped. One of our biggest worries was passing the required Covid test. We were being quite careful with our interactions and had no reason to believe he was sick (besides the whole liver failure thing), but there was always the chance that we were exposed and didn’t realize it. And if Joey’s test came back positive, the surgery would be canceled. Pre-op ended up going smoothly, but the team needed to find a different recipient for the donor lungs so they needed an additional 24 hours to find a new recipient or they’d proceed without taking the lungs.

Feeling miserable, but looking fresh with that haircut.

So the surgery was postponed a third time. 

We opted to stay admitted in the hospital so Joey was already prepped and available for whenever the surgery would be scheduled next. He also didn't want to deal with the anxiety of retaking the Covid test if we left the hospital. And again, he was briefly given an opportunity to eat before being told to fast for this mYsTERiouS upcoming surgery. We were transferred to the transplant floor for the night and given conflicting information on whether or not I could stay with him. Ultimately, I had to go home. TeChnIcalLy, a guest CoULd stay with the patient the night before a surgery, but since there wasn’t ActUAllY a time sChedULeD, I had to leave.

This room had THE BEST view. When we went back to the hospital ten days later for the actual transplant, his recovery room was in a corner and the view was a brick wall. *shrug*

When I returned to the hospital on Friday, January 21st, we were given another new surgery time. At noon, Joey would be taken to the OR with ‘cut time’ set for 1:00PM. I was with him on the pre-op floor and we were both nervous about the surgery being postponed again or even worse– it being canceled. Joey was sanitized, poked, hair net on, and the anesthesiologist had just explained to us exactly what her team would be doing during the surgery. She left, we anxiously waited. This was the farthest we’d gotten. There was even a moment where I bent down to hug him and said, “Let’s be positive until we have a reason to be negative.”

Not ten minutes later, around 11:45AM, a nurse came to us and asked if the transplant team had talked to us. We told her we just met with the anesthesiologist. She said, “Oh. So nobody’s told you the surgery has been canceled?”

I can picture with perfect clarity what Joey’s face looked like when she said this. It was scrunched up for a moment before his palms went to his eyes. I can imagine what my face looked like. I was angry. I informed her that we were not aware of the cancellation and we were extremely frustrated. I said something about it being our third call and how difficult it was to be jostled from one surgery time and date to another with this particular visit. Her response was, “Oh some people get seven calls before it’s the one.” To which I replied, “That’s not helpful.” I don’t remember anything else about this interaction, but I remember how I felt. I remember thinking this dingbat needs to read the room. I know she was trying to help us change our perspective on the experience, but she did it so incredibly badly. Essentially, she told two profoundly upset people, It could be worse! This experience could happen over and over! Be glad you’ve only been disappointed three times so far! If you live long enough, you could suffer again and again like the other souls going through organ failure! See you next time!

We were transferred back to the transplant floor to wait for a team member to discuss “next steps” with us. Joey was allowed to eat while we waited, but he was in so much discomfort I don't think he did. We had another frustrating discussion with a doctor from the team. He explained that the donor liver showed signs of cirrhosis and was deemed unusable. This piece of information was neutral– of course, everyone involved wanted only the best liver possible. Again, I explained that we understood that this kind of roller coaster could happen while waiting for a transplant, but that we were really frustrated. He said that Joey’s small frame, combined with his blood type made it exceptionally more difficult to find a good match. He also gave some examples about how someone like Joey is likely going to have his MELD get pretty high (it was 33 at the time of this call) while waiting. To all this, I responded, “What you’re saying makes this sound like our wait is pretty hopeless.” Insert backpedaling. Joey appreciated that the doctor was telling it like it is, but I stand by my issue with the way it was done. Before we left, we requested some testing to see if his ascites was bad enough to be drained. Whatever test they did only showed a stool blockage. HoOrAY. A brand new frustration. It was after 4:00PM by the time we were discharged.

When we returned home from this fresh disappointment, we spent a couple days trying to recover. His pain continued and one night we were convinced he had pancreatitis. We scheduled multiple appointments for January 25th and 26th to learn that the edema (fluid retention) was, in fact, worse than before, but the ascites (fluid in the abdomen specifically) still wasn't bad enough to warrant a paracentesis and the majority of the pain ended up being from the significant stool blockage. 

As difficult as it sometimes is, we stand by our belief that God is good all the time. And there was good stuff that happened during all this. The outpouring of people who provided food or sent kind messages because they knew about our disappointment was like a hug– a hug you weren’t prepared for and didn’t realize how badly you needed. And again, people only sort of connected to our inner circle of community were also involved and it’s simply amazing to me how kind other humans can be to people they don’t even really know. Another example of God’s providence is that the day we were told the surgery was canceled, our friend was there at the hospital. Whitney has been mentioned before as the bringer of baked goods from around the corner, but she is also one of the several people that offered to be a living donor for us. She was there that day getting more tests done related to potentially being our donor. And that hug I referenced above? I got a real one from her when we found each other in the lobby after I texted her the update about the surgery. 

Now, back to the drama.

I thought things were dark in our house after the blood shortage but HOO BOY did it get even darker after this call. I was nervous to leave Joey, but since we were back to just waiting, I returned to work on Thursday, January 27. The residents cheered when I walked in to call bingo and they asked how Joey was and I don’t even remember what I said. Probably something stupid like, “He’s hanging in there!” Also, Joey was somehow still working through all this, but it certainly initiated the conversation of taking Short Term Disability Leave sooner than anticipated.

While I was at work, Joey got the 4th offer call. I completed the workday since we didn’t need to be back at the hospital until 10:00PM. I wasn’t excited or scared. I was mostly just nervous about telling work I’d need time off… again. I like to be a reliable person and I simply could not be counted on for things outside of caring for Joey. 

Around 10:40PM, we were getting situated in a hospital room. Joey was given a gown and was swabbed for the Covid test. At 10:50PM, before he even changed into the gown, it was canceled. I can’t even remember why. We didn’t really care. We didn’t expect it to be successful anyway. We were discharged and headed home in decent spirits all things considered. Joey had an appointment with his psychologist on Friday, January 28 and could try to process all this with her.

And two days after the 4th call, on Saturday, January 29 around 11:00AM, we got our 5th offer.

And now, a word from our spoonie: "Every fart is a gift from God." -Joey, on January 27th when the very strong laxatives started to work.