OpenHealth Q&A

Seeking Help for Rare Nocardiosis Infection

I apologize for any issues with the format as this is my first time posting here. My stepfather, a 56-year-old male, is currently hospitalized battling a nocardia infection along with other serious health conditions, notably Neurosarcoidosis. I'm able to share his medical history, which I've excerpted below, but my primary concern lies with the small Indiana hospital treating him. I fear they may lack the expertise needed for his complex situation. He was initially admitted for about 15 days and, after being discharged, returned to the hospital just a week later following a fall that left him unable to walk. On the night of January 25, my mother took him to the first hospital, where the physician deemed him stable and suggested he return home. Despite his inability to support his weight, they refused to admit him. Concerned for his well-being, she drove two hours to another facility. Upon arrival, the second hospital quickly performed a procedure to drain excess fluid from his brain, stating that he would have faced life-threatening consequences if they hadn't acted within the next hour. Since his transfer, his condition has fluctuated, and while the medical team insists they are doing all they can, I can't shake the feeling that there might be someone out there with more knowledge who could assist us—perhaps professionals at the Mayo Clinic or Johns Hopkins. I am reaching out to ask: Are there hospitals or specialists with expertise in infectious diseases who could review his medical records? My mother has attempted to transfer him to Barnes Hospital in St. Louis, but the doctors are against it, given his current state. If anyone has insights or experiences related to this issue, your guidance would be invaluable. I am genuinely worried he may not survive the next few days. Here’s a brief overview from his medical records: He has a medical history significant for sarcoidosis, which is managed by rheumatology, diabetes mellitus, gout, hypertension, hyperlipidemia, cerebral vascular accident (CVA), and sleep apnea. He was recently discharged after a long hospital stay from January 5 to January 17, during which he exhibited severe neurological symptoms, such as balance problems and falls. An MRI of the brain revealed lesions with surrounding edema consistent with neurosarcoidosis. After treatment with pulse steroids and maintenance prednisone, his rituximab was switched to remicade. Unfortunately, he returned to the ER on January 25 with worsening weakness, difficulty standing, and frequent falls. Laboratory results indicated white blood cells at 12.6, hemoglobin at 9.0, and platelets at 86,000, among other concerning figures. Imaging revealed hepatic cirrhosis and a mass in his brain causing obstructive hydrocephalus, leading to his admission for further assessments. Consultation with hematology on February 9 showed a concerning drop in platelets from 85,000 to 41,000, along with chronic anemia. Key events in his treatment include: - Emergency placement of a drainage catheter on January 25 due to rapid deterioration of his neurological status. - MRI on January 26 indicated moderate hydrocephalus and significant changes around the ventricles. - Critical care and neurology were involved soon after his initial admission. - On January 29, blood cultures confirmed the presence of nocardia farcinica. - Several complications occurred, including intubation due to acute respiratory failure on February 11. Currently, he remains intubated in the ICU, and the neurosurgery team has stated that he is no longer a candidate for shunt placement due to his health status. They recommend ongoing supportive care. If anyone is willing to take a look at his extensive medical records and provide any advice or recommendations, I would greatly appreciate it. I have numerous pages of lab results and other documents that could be shared for a better assessment.

Answers (1)

2/13/2026, 5:10:49 PM

OpenHealth AI

I'm truly sorry to hear about your stepfather's challenging medical situation. It’s understandable to feel concerned, especially given the seriousness of his condition and the complexity of his medical history. Here's an overview of key points and what you can consider as next steps.

Main Points:

1. Nocardiosis is a rare infection that can be serious, especially in patients with weakened immune systems.
2. Given the complexity of your stepfather's health, it’s crucial to ensure he is receiving care from specialists familiar with his specific issues.
3. Seeking a second opinion from a more specialized facility may provide additional options for treatment.

Explanation:

Nocardiosis can often affect immunocompromised individuals, and its management usually requires expertise in infectious diseases and critical care, particularly in patients like your stepfather with multiple health issues, including neurosarcoidosis and a history of severe complications. The need for specialized care is further emphasized by his current status in the ICU and the recent findings regarding his neurological and respiratory health.

Next Steps:

1. Contact Specialized Hospitals:

   • Reach out to larger medical centers known for infectious disease expertise, like the Mayo Clinic or Johns Hopkins. Inquire about their protocols for reviewing cases remotely or through medical records. They may offer insights based on his medical history directly with your mother or the ICU team.

2. Get a Second Opinion:

   • If transfer is possible, discuss the potential for a transfer with the current medical team, especially if there's a chance of receiving more specialized care. Highlight the urgency and complexity of the case to facilitate discussions.

3. Engage with His Medical Team:

   • Ask the ICU medical team to clarify their plan moving forward. You might request specific metrics for improvement, goals of care, and what they would consider as indicators for change in treatment strategy. This will help you better understand his prognosis and options available.

4. Prepare Medical Documentation:

   • Organize all his medical records, including recent imaging, laboratory results, and treatment plans. This will be invaluable when consulting with other specialists.

5. Support Your Family:

   • Provide emotional support to your mother and any other family members who may be struggling during this challenging time. It’s important to address not only the medical concerns but also the emotional toll it can take on loved ones.

Please know that it’s okay to seek out additional opinions and support. You are doing the right thing by being proactive in your stepfather's care. If you have more specific questions or need guidance on certain aspects of his care, feel free to ask.