December 5th 2019 we got the call we have been waiting for since October 17th. at 10:45pm. Neither of us slept much that night. We set the alarm for 5am because we needed to be there by 8am. We showered, coffied and hit the road early because of the undependable traffic and wound up there an hour early. After the check-in process he found himself in a bed and having about 29 vials of blood taken, the transplant intern asking him questions and telling him the risks and the anesthesiologist explaining about pain management. When all was said and done we sat in a semi darkened room waiting, and waiting and… we went home.
Today is Thursday, December 12th… They called us in to the hospital at 1am. We made it here from a sound sleep by 1:58. Kolo is sleeping and waiting. I am waiting poorly. Paula is going to stop by and let the dogs out. Another 29 vials of blood were taken.
I really hope for his sake that he gets the transplant today. He is slowly going down hill, having a paracentesis every week – this Tuesday they took out 9.6 pounds of water from his belly. They stick a very big needle all the way through skin, muscle and sinew to get it. That’s an entire baby. Since they sent him home last week he’s been a bear to deal with and depressed to boot. So for my sake I hope he gets a liver today too.
The stress has been almost unbearable. My stomach is testament to that.
They sent us home at 7:35am…
Dec 18th, the third trip to the hospital we left at 2pm and we were home by 6pm. This liver was from a man 60 years old and when they got into it they did not think it was good enough for transplant. Somebody who was 60 years old died. He probably had a family. Its hard not to think about that part of it.
December 22nd. They called on my birthday (21st) at around 7pm to ask us to come in by 8am Sunday. This time the liver was viable. They took him into surgery at 12:30. It’s now 1:43. I have this vision of him on the table with his belly wide open and the innards that are in the way, moved to the side. I am oddly calm. This will be better than what was happening. He was refusing to eat and he had every excuse in the book about it. He was very depressed and his meld score had gone up to 22.
MELD: Acronym for Model End Stage Liver Disease. A disease severity scoring system for adults with liver disease, designed to improve the organ allocation in transplantation based on the severity of liver disease. https://www.medicinenet.com › script › main › art
He had begun to loose cognitive functioning very little by little, but even he noticed it. We have all had to learn throughout this process.
Because we had so many trips here, neither he nor I was willing to believe that it was actually happening until he sat in his wheel chair outside of surgery and I kissed him good bye. It is my wish that this procedure goes off without a hitch.
I’ll bet he asked to drive again…
2:22 pm. OR just called. They made the incision at 2pm. So the image I had above is now a reality. I am glad they finally got him a liver today, because with a meld score of 22 (probably 23) he was heading for post-operative kidney stress and problems in ICU. Curiously the meld score is a better predictor of length of stay in ICU than that of the overall success rate of the transplant. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2911764/ The kidney stress he was already experiencing requiring him to be given two pints albumin intravenously last Saturday, are an indicator of sketchy recovery and kidney failure in ICU if he had had to wait any longer. So, it couldn’t have happened at a better time.
While I sit in the surgery waiting room, I keep seeing someone out of the corner of my eye walking back and forth down the hallway. I look up and there’s no one there. After a while I got up and moved further back in this very big waiting room with various alcoves and seating arrangements and away from the hallway so I wouldn’t keep catching stuff out of the periphery of my eye while I was writing part of this story.
While the visual acuity or visual resolution is much better with the cones, the rods are better motion sensors. Since the rods predominate in the peripheral vision, that peripheral vision is more light sensitive, enabling you to see dimmer objects in your peripheral vision. If you see a dim star in your peripheral vision, it may disappear when you look at it directly since you are then moving the image onto the cone-rich fovea region which is less light sensitive. You can detect motion better with your peripheral vision, since it is primarily rod vision. The rods employ a sensitive photopigment called rhodopsin. From <http://hyperphysics.phy-astr.gsu.edu/hbase/vision/rodcone.html>
Periodically I keep seeing a shadow moving quickly through the room in my peripheral vision. It is Sunday night and I am the only person in the waiting room – it happened enough to get my attention. The surgery waiting room is in the basement, along with all the surgery suites and… the morgue. It finally dawned on me once I moved where I couldn’t see the hallway, that there were either a lot of ghosts moving through the area, or one ghost that paced a lot.
4pm. Close to three hours later, they closed him up with a successful transplant. He only needed two liters of blood and two hours after that the breathing tube came out of his throat. So far he is a legendary beast on the TICU (transplant ICU) floor. He blew a 2000 milliliter exhale before he was really even back from the anesthetic. The first thing that comes out his mouth is his humor. Once he was back with us he kept asking for ice chips – which they couldn’t quite give him yet. When that didn’t work he started bargaining for them and had gotten down to just an 8th of a chip, when his nurse, Christina finally told him that all he was going to get from her was “tough love”.
Today, Dec 23rd, when I walked into his room, half the tubes and paraphernalia were gone. If this next dose of anti-rejection drugs goes well, he will be moved to the step down unit out of TICU!
The beast…. Who is still not going to drive…
Remember in a previous article where I cited research on the phenomena of the recipient having memories and or feelings that were not their own after transplant? One of the first things out of Kolo’s mouth before he was fully cognizant was, “I am drowning!” followed by “I need to sit up” even though he was already sitting up. It happened about every minute for at least an hour and a half. And it has me wondering whether his donor might have drowned which we will never be told but is a ponder for the future.
He is now deeply asleep and accepting this latest infusion of anti-rejection meds well as I sit here writing this blog. His vitals are good, and he is very strong. I am sending great clouds of gratitude to the universe for his safekeeping and his progress. The next three days are as important as the transplant itself.