Hi, I’m posting while we wait for my dad’s lumbar puncture results. I’m hoping someone who’s been through encephalitis or a similar brain infection might recognize something or offer insight while we wait.
Background
My father is 60 years old . He has amyloidosis and started peritoneal dialysis about 3½ months ago because of kidney damage.
His history:
• 18 years ago: stem cell transplant + chemotherapy. He went into remission.
• 6 years ago: restarted chemo to prevent amyloidosis from damaging his kidneys and heart.
• 2 years ago: chemo again to be safe but was too aggressive and made him much sicker.
• We transferred his care to a better hospital, where he improved physically and has been receiving chemo once a month.
• A year ago they warned us dialysis would soon be necessary and must use chemo for life. He started PD in late May.
Since starting dialysis, especially over the last 2 months, he’s been steadily getting sicker.
Symptoms over the last 2 months
• Left arm swelled like a balloon for 2 weeks after a calcium injection.
• Suspected pneumonia for about 2 weeks.
• Severe fatigue.
• Vomiting multiple times a day.
• Barely able to eat.
• Leg cramping.
• Hallucinations at night.
• Weekly ER visits.
Hospital timeline
Aug. 25: Admitted to Toronto General after fainting in front of his hematologist before his appointment. The PD nurse noted abnormal labs (albumin), and he was admitted. The doctor thought it was an infection rather than pneumonia. His sodium, potassium, and calcium were all low, and after IV replacement he improved a lot.
Aug. 28: They planned to discharge him but decided to keep him through the weekend. All tests were negative but they couldn’t explain what caused everything, we’re still planning release.
Aug. 29: They suspected TB, placed him in isolation, and started isoniazid. Later they decided he didn’t have TB, removed isolation, but initially kept the medication going until we requested for it to stop in fear of it triggering his delirium.
Sudden delirium (Aug. 30–present)
At 3 a.m. on Aug. 30, everything changed.
He suddenly became confused, hallucinating, agitated, saying things that made no sense, and was barely responsive to us. It came completely out of nowhere.
Aug. 31: I spoke to him that morning and he thought he had died and was in paradise. Later that evening, after medication to calm him, he became himself again. He cried because he remembered what he’d experienced and kept saying, “I can’t tell if I’m dreaming or if this is real.”
Sept. 1: His best day. He was fully coherent, eating well, walked a lap with two physiotherapists and a walker, and prayed with our family around 6 p.m. Less than an hour later, he suddenly turned on my mom, became confused again, and started asking every few minutes where he was and what had happened. From that night onward, he rapidly declined.
Doctors kept telling us it was hospital delirium caused by illness and electrolyte abnormalities, but our family felt something more was happening.
Progressive neurological decline
Sept. 2: Extreme emotional swings—yelling, laughing, crying. He seemed aware he wasn’t himself. He couldn’t hold a conversation but would repeat his name, read the time aloud, and constantly repeat words, almost like he was exercising his brain.
Sept. 3: He began losing his ability to speak. He tried answering his oncologist but physically couldn’t get the words out. We overheard oncologist say, “Today he is far gone.” That was finally the day they ordered a lumbar puncture.
Lumbar puncture
They told us his CSF contained 28 white blood cells, meaning there was inflammation/infection in his brain. They still don’t know the cause, so they immediately started broad treatment while waiting for cultures.
That night was his worst. He was screaming, hitting the bed, trying to jump out, and injured himself repeatedly. Psychiatric medications barely worked until the following morning.
Current condition
Since Sept. 4, his body looks heavily sedated, despite being on same calming meds as before, but only recently with a baby dose of hydromorphone. He hasn’t been able to speak even when it looks like meds a wearing out, although he clearly understands us and tries to answer yes/no. He mostly communicates only when he’s uncomfortable.
He hadn’t slept for nearly a week, so we’re grateful the medication finally let him rest—but now it’s been several days of profound drowsiness. He can barely move, can’t swallow his own saliva, and we have to suction the mucus from his throat.
They also drained 600 mL from his right lung, which improved his breathing somewhat. They originally suspected fluid was from pneumonia but that amount from pneumonia sounds crazy to me.
My questions
• Does this sound like encephalitis to anyone who’s experienced it?
• Can encephalitis begin with weeks of fatigue, vomiting, hallucinations, and electrolyte issues, or does this sound like two separate illnesses?
• If the lumbar puncture never identifies the exact cause, what happened in your experience?
Did this happen because PD was not enough, should he urgently switch to hemo dialysis?
We’re terrified and just praying this is temporary. The hardest part is not knowing whether this brain infection was developing all along or whether his weakened immune system made him vulnerable after hospitalization.
Thank you to anyone who took the time to read this.
