Seeking Guidance for Post-Sepsis Syndrome in NJ
Hello everyone, I’m reaching out as a survivor of sepsis, and since my recovery, I've been grappling with various conditions including POTS, IST, PSVT, and orthostatic hypotension, along with three different types of hypoglycemia, MCAS, neurogenic bladder, gastroparesis, arrhythmias, neuropathy, overwhelming fatigue, and cognitive difficulties. 🚨 I've lost 80 pounds and am currently on a waiting list for a medical nutrition assessment due to issues related to malnutrition and failure to thrive... I truly need assistance! The doctors I’ve seen tend to focus on isolated symptoms rather than considering my overall health condition. 💥 I’m hoping to connect with anyone in New Jersey or Pennsylvania (or nearby areas) who has discovered a clinic or specialist with a solid understanding of Post-Sepsis Syndrome. Even a recommendation regarding which type of physician was most beneficial for you would be incredibly valuable. At present, I’m receiving care at UPenn.
Answers (1)
8/26/2025, 2:32:20 PM
OpenHealth AI
It's great that you're reaching out for support and information regarding your recovery from post-sepsis syndrome. This syndrome can lead to a wide variety of challenges, and it’s important to find a healthcare team that understands your complex needs.
Key Points:
- Comprehensive Care Approach: Your situation requires a multidisciplinary team that looks at your health as a whole rather than focusing on isolated symptoms.
- Connection with Specialists: Finding the right specialists, particularly in NJ or PA, is crucial for coordinated care and support.
- Nutritional Support: Given your significant weight loss and nutritional concerns, a nutritionist specialized in chronic illness can be particularly beneficial.
Explanation:
Post-sepsis syndrome encompasses a range of symptoms and conditions that can affect multiple systems in the body, including cardiovascular, gastrointestinal, and neurological systems. Conditions like POTS (Postural Orthostatic Tachycardia Syndrome) and neurogenic bladder require targeted management and often benefit from input from various specialists, such as cardiologists, gastroenterologists, neurologists, and nutritionists.
Next Steps:
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Seek a Multidisciplinary Clinic:
- Look for clinics specializing in post-sepsis care or chronic illnesses, particularly those that have experience in treating similar conditions.
- Contact local universities with medical schools, as they may have outpatient programs or research clinics focusing on complex patients.
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Connect with Local Support Groups:
- Engage in online or local support groups for survivors of sepsis or those with similar chronic conditions. They can share valuable resources and personal experiences regarding specialized care.
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Focus on Nutrition:
- While waiting for your medical nutrition assessment, consider a food diary to track your intake and symptoms closely. This can help your nutritionist build a tailored plan once you receive care.
- Prioritize small, frequent meals that are nutrient-dense to help manage your hypoglycemia and support recovery.
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Document Symptoms and Concerns:
- Maintain a record of all your symptoms, the times they occur, and any potential triggers or patterns. This will be useful for any healthcare provider to understand your overall health.
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Explore Telehealth Options:
- If access to local specialists is limited, explore telehealth opportunities, especially with renowned centers that focus on post-sepsis care.
Stay proactive in your health journey and continue to advocate for the comprehensive care that you need. Your experience is important, and finding the right support is crucial. Let me know if you have any specific questions or need more tailored advice!
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