Concerns About My Dad's Myasthenic Crisis After Four Weeks in ICU
Hello everyone, I want to begin by acknowledging that none of you can predict my father’s future. What I’m hoping for is insight into whether his situation is fairly typical or if it’s indeed as serious as it feels right now. My father, age 58, has been undergoing treatment for advanced stage melanoma with immunotherapy, which surprisingly led to the development of Myasthenia Gravis (MG). Initially, I found this hard to believe until I delved into the details. The statistics regarding cases caused by immune checkpoint inhibitors are stark, as they involve significantly fewer patients compared to the standard occurrences of MG. His health deteriorated swiftly. Upon his arrival at the ICU, he was already facing respiratory failure and soon received a diagnosis of MG. He spent a couple of days on BiPAP before needing emergency intubation. After being on a ventilator for just over a week, he transitioned back to BiPAP. Unfortunately, this was short-lived, and he had to return to the ventilator once again, this time with a tracheostomy and a PEG tube inserted. These measures, as I understand, aim to provide sustained nutritional and respiratory assistance. While he was initially given IVIG upon admission, the urgent intubation led the medical team to halt this treatment, worrying that he wouldn’t have the time to experience its full benefits, which usually take about 10 to 14 days. Instead, he underwent three plasma exchange sessions over three days, followed by two more over the next four days. Remarkably, he responded positively, managing to breathe independently for up to six hours. Despite his exhalation volume being adequate at that point, he was so exhausted that he struggled to communicate or keep his eyes open without help. However, once the ventilator was removed, it was as though we slipped back to the day before his intubation. We had been tentatively organizing his transfer to an inpatient rehabilitation facility, but suddenly his voice faltered, and he started propping his eyelids open to see—only to find that his vision was too blurred for clarity. What can I anticipate for the course of a Myasthenic crisis? Is prolonged reliance on respiratory support typical in these cases? I recognize that MG exhibits different symptoms across individuals, and no two experiences are identical. Furthermore, I understand that many (if not most) individuals with MG face a crisis at some point. Yet, this feels exceptionally overwhelming. The doctors express optimism regarding his outlook, yet their tone seems more self-reassuring than it does hopeful for me.
Answers (1)
7/13/2025, 9:01:40 PM
OpenHealth AI
I want to acknowledge the emotional weight of your situation; it’s understandable to feel overwhelmed given your father’s complicated health journey. Your father’s diagnosis of Myasthenia Gravis (MG) following cancer treatment with immunotherapy presents unique challenges, particularly in severe cases like a myasthenic crisis, which often necessitates intensive care.
Main Points:
- Myasthenic Crisis Complexity: Prolonged respiratory support and fluctuating symptoms are typical in a myasthenic crisis.
- Variability of Recovery: Each patient’s response to treatment can vary greatly; progression and resolution are not always linear.
- Communication with Care Team: Continuous openness with healthcare professionals is key to understanding what to expect.
Explanation:
A myasthenic crisis occurs when the respiratory muscles become too weak to function effectively, leading to respiratory failure requiring interventions like BiPAP or intubation. Your father’s reliance on respiratory support does reflect the severity of his condition, which can be influenced by factors such as the abrupt onset of symptoms, the intensity of treatments (like IVIG and plasma exchange), and his overall health.
It’s important to remember that while recovery from a crisis can be slow and may involve ups and downs, patients often show significant improvement with timely and appropriate management. In some cases, recovering strength and independence can take longer due to the effects of prolonged ventilation and the underlying MG itself.
Next Steps:
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Monitor Symptoms Closely: Keep a detailed record of your father’s symptoms, noting any changes in his respiratory function or overall level of alertness. This information can be invaluable for the medical team.
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Set Up Family Meetings: Arrange regular discussions with his healthcare team to stay informed about his progress, treatment plans, and what to realistically expect moving forward. Ask direct questions about their treatment rationale and outlook for recovery.
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Consider Involvement in Rehabilitation: As he stabilizes, inquire about potential rehabilitation options that can support breathing exercises and overall physical recovery, which are crucial for patients with MG.
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Emotional Support: Ensure you and your family have support throughout this challenging time—consider seeking out counseling or support groups for families dealing with chronic illnesses.
Lastly, it’s completely normal to feel a mix of hope and fear during this time. Your involvement and care are already making a positive impact on your father's journey.
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