When Roy had the immunotherapy, the primary expected side effect was fatigue with a secondary expectation of feeling unwell similar to a stomach bug. Generally, that’s how things appeared – Roy slept a lot more, he complained of nausea, and he said he felt crummy. He was unsure of whether he’d slept into the next day or not, and took the anti-nausea meds, and basically appeared to be resting and recovering.
On Monday, Roy made the decision to preemptively cancel his cardiac transplant evaluation (supposed to happen this Wednesday) because he didn’t feel up to it. To be fair, I made him get an ultrasound on his thyroid that morning (which resulted in a check-back-in-a-year thing and not more cancer). Nonetheless, we discussed and agreed that finishing the transplant clearances sooner would be better than waiting for later; Roy would ask to reschedule for a better spot in the next immunotherapy cycle so he would feel better when doing those kinds of procedures. Roy complained about still feeling poorly on Monday night, but he was starting to eat more normal foods and we discussed how to build up his strength – maybe asking for another PT referral, maybe getting a rollator to do some more walking with the option of a periodic seat, maybe finding a place to amble inside. He was fatigued, tired of feeling ill, but seemed on the mend.
Tuesday morning everything went sideways. I had plans to meet a friend for lunch and got up at my regular time to eat breakfast and think about how to tackle some of this, but when I went back to our bedroom to get ready for my day, things were not right. Roy was sitting up on the bed and when I asked him why he was awake and what he was doing, his answers did not make sense and he was irritated by me asking. I cancelled my plans. He laid back down to sleep and I went to clean up a mess. When I came back in, we repeated this cycle and I went to call the oncology nurse navigator to ask if this was related to the immunotherapy and if I needed to bring him to Methodist or not. I was (more than) a little freaked out but trying to figure out if I was overreacting or not.
I chatted by phone with the nurse navigator and then Dr. Abdelrahim’s nurse who said this wasn’t a normal response to the treatment and I needed to take him to the ER. While trying to keep me calm, she thereby confirmed one of my long-held liver-related fears and I went into problem-tackling mode to get him dressed and to the ER. We could’ve gone down to a Methodist ER but if this was what I feared, I didn’t want to waste time driving.
Roy, but not really Roy, was not happy with my decision to go to the doctor. Not-Roy did not want to change his clothes, put on his shoes, or go anywhere and Not-Roy could not tell me the day of the week, the date, the month; was using “what” or “how” instead of “why;” answered questions with garbled questions; and kept repeating phrases in the wrong context. If I asked Not-Roy to sit, he would lay down, to stand, he would sit, and I heard a lot of “stop” and “no” from Not-Roy as I tried to get him dressed. He didn’t understand directional things either so getting to the car took a lot of shuffling steps (with his hip-replacement walker) and me guiding him away from walls and around corners for what felt like an excruciatingly long time. Not-Roy did not want to stay in the passenger seat and resented the use of a seat belt. When we got to the Emergency Room, Not-Roy had difficulty understanding that he needed to sit in the wheelchair at all and then to continue to sit in the wheelchair while we waited for his name to be called.
Someone in the ER was paying attention to the key words I gave at check-in and they called his name within ten minutes and brought him back (but next time, if there is one, I am just going to name the monster then and there, because now I know its name). Almost immediately from triage, Not-Roy received room 23 as his new location. He was able to tell the staff his name and birthdate but got tripped up on the current year. He was not really opening his eyes for them and was slow in his responses. They went into diagnosis mode and drew blood for multiple lab tests and asked me a lot of questions – no falls, no heart issues – his medical history, etc. including what medications does he take? And had he taken his medications? I couldn’t confirm that Not-Roy had taken all his medications as normal – that’s always been his duck to tend – but I knew what was happening when they brought him lactulose to drink. Roy does take Kristalose daily along with a slew of other drugs familiar to liver patients, but did Not-Roy take them? No idea. Yes, managing and supervising medications is going to become my duck.
The next few hours included two failed attempts at a catheter as well as a trip to imaging for an intended CT scan of his head, and two add-on CT scans of his abdomen and pelvis. While we waited for those tests, the nurses tried to make him comfortable and started mentioning bringing his ammonia level down. They were considering heart issues, stroke, and all the things.
Yep his ammonia level was excessively high – the doctor said at 143 when he came back through and his bilirubin scared them at a 2 (concerning for regular folks but relatively low for Roy). Back in 2004, elevated ammonia (and its result) was one of the possible impacts that the doctors told me to anticipate; during the Great Liver Incident, Roy suffered through a series of math problems at random intervals to check whether he was still clicking mentally. Roy has had ammonia lab-checked over the years but mostly he has had medications that aim to keep ammonia at bay. The primary way that liver patients control the ammonia is by using drugs like Lactulose and Rifaximin. Roy has these two in his regular medications. Lactulose helps trap ammonia in the colon so it is excreted and Rifaximin reduces the number of bacteria that create ammonia. Needless to say, the Emergency personnel were glad to know he was familiar with taking these drugs but also began to treat him using them.
So what’s the big deal with ammonia? In simple terms, ammonia is toxic to your brain and can damage your central nervous system. Ammonia is a result of the bacteria in the digestive system breaking down protein. Roy is supposed to eat more protein while he is in treatment. A healthy liver, in some ways, plays the role of garbage collector for your body and helps the body eliminate ammonia by converting it into urea for the kidneys to process out in urine. So far, so good, but if your body can’t eliminate the ammonia, it can build up in the blood stream. So what? Well, the problem is that ammonia is toxic for your brain. This looks like confusion, forgetfulness, headache, fatigue/tiredness, and nausea, but can also include dizziness, vomiting, seizures, breathing difficulties, or lead to coma or death. The build-up of ammonia might happen as a result of liver disease among other things.
Throughout Tuesday evening, Roy still in Not-Roy mode, kept asking if he could go home, asking what happened/was happening, saying things were silly, and asking where he was. He indicated that his head hurt, that he was tired, that he did not feel well. Eventually the Emergency Doc came back with the definitive diagnosis that Roy had Hepatic Encephalopathy (HE). Hepatic Encephalopathy is the fancy term for his brain was injured by ammonia and not functioning properly. He was going to be admitted until they could get the ammonia down. He received some fluids. Roy was beginning to emerge from the Not-Roy but truly was not aware of where he was or really what was going on, other than me telling him that the nurses were trying to make him feel better. He was still very sleepy, still a bit conked out, but was able to agree to take medications as they were brought to him and mostly slept as he waited for a hospital room. He stayed with the Emergency department overnight but was enough of himself to tell me to go home to rest.
Wednesday morning, I found Roy still in Room 23, and still being presented with the periodic gift of chugging some lactulose, but also receiving some albumin, and generally clearer in his mind. Roy did not remember Tuesday’s events and his stint as Not-Roy. He wanted to know what happened so I told him. He was still whipped and not feeling well, but he was more Roy than not. He got his real hospital room at about 1 pm that day. He’s still in the hospital and they’re still fighting the ammonia, but it is retreating. His body is trying to correct a bunch of things (a UTI, low blood pressure, and some dehydration) and we are hoping that he will be in residence for a day or two more at most.
The Emergency doc and the hospitalists linked his little dance with Hepatic Encephalopathy to the immunotherapy because of the timing. We will be meeting with Oncology after his discharge to discuss next steps. In the meantime he is currently being cared for by a terrific team of nurses, patient care technicians, and hospitalists, and the Emergency team was fantastic. Roy is improving and I definitely know what HE looks like, so if it rears its ugly head again, look out.
P.S. I have been duly chastised for attempting to handle things on my own and not letting people help. I will do better.
Waiting 
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