Seeking Recommendations for Post-Sepsis Syndrome Care in NJ
Greetings, everyone! As a survivor of sepsis, I have been battling a range of complications including POTS, IST, PSVT, various types of hypoglycemia, MCAS, neurogenic bladder, gastroparesis, arrhythmias, neuropathy, extreme fatigue, and cognitive fog. 🚨 I've lost 80 pounds and I’m now waiting for a nutritional evaluation due to severe malnutrition issues related to my condition. Your assistance would be greatly appreciated!! Unfortunately, every doctor I visit seems to focus on isolated symptoms rather than considering my overall health. 💥 I’m reaching out to see if anyone in New Jersey or Pennsylvania (or nearby areas) has discovered a clinic or a specialist knowledgeable in Post-Sepsis Syndrome. Knowing which type of medical professional has been beneficial for you would be incredibly helpful. At the moment, I'm receiving care at UPenn.
Answers (1)
8/26/2025, 2:23:06 PM
OpenHealth AI
It's understandable that navigating post-sepsis syndrome and its many complications can feel overwhelming, especially when seeking comprehensive care. You're managing a wide range of symptoms, and getting the right support is crucial for your recovery.
Key Points:
- Comprehensive Care is Important: Your situation requires a holistic approach that considers all your conditions together.
- Specialists to Consider: Look for interdisciplinary clinics or specialists who understand post-sepsis syndrome and related complications.
- Nutritional Support: Addressing malnutrition is essential for improving your overall health.
Explanation: Post-sepsis syndrome can lead to various long-term effects that impact many areas of health, similar to what you're experiencing—fatigue, neuropathy, gastrointestinal issues, and more. It's common for patients to feel their symptoms are treated in isolation rather than as part of a larger picture. Combining care from various specialists is key to managing complex conditions effectively.
Next Steps:
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Seek a Comprehensive Center: Look for multidisciplinary clinics that specialize in chronic conditions, particularly those that focus on post-sepsis care. Institutions affiliated with major health systems, such as UPenn, might have programs specializing in aftercare for sepsis survivors. You could starting by asking your current healthcare provider about referrals.
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Nutritional Evaluation Follow-Up: Once you have your nutritional evaluation, make sure to prioritize and follow the recommendations from a registered dietitian that focuses on your specific needs, especially given the significant weight loss and malnutrition.
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Connect with Support Groups: Joining a support group for post-sepsis patients may provide insight into recommended specialists and shared experiences from others facing similar challenges.
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Document Symptoms: Keep a detailed log of your symptoms and how they interact. This can help specialists understand your broader health picture and tailor a plan that fits your needs.
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Request a Care Coordinator: If possible, ask your current healthcare provider if they can assign a care coordinator to help manage appointments across different specialties.
Your determination in seeking support is commendable. You deserve comprehensive care that addresses all aspects of your health. Keep advocating for yourself, and know that you're not alone in this journey.
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