Seeking Urgent Guidance: FGN and Rapid Decline in Kidney Function
Subject: Critical Issues: Fibrillary Glomerulonephritis (FGN), Significant eGFR Decrease, and Vision Impairment – Immediate Assistance Required Profile: 32-year-old Female Drug History: Previous use of NSAIDs (Naproxen), various antibiotics, and a prescription history of steroids Health Background: Suffer from Hidradenitis Suppurativa, recurrent infections, and chronic dental pain. Hello everyone, I urgently need some medical advice as I am experiencing a rapid deterioration in my health and feel unsupported in my care. 🔹 Kidney Health: Fibrillary Glomerulonephritis (FGN) & Declining eGFR My renal issues were initially diagnosed as diabetic nephropathy; however, my endocrinologist has since clarified that I am not diabetic, meaning my kidney failure was wrongly attributed to diabetes. A biopsy has confirmed that I have Fibrillary Glomerulonephritis. Recently, my estimated Glomerular Filtration Rate (eGFR) plummeted from 54 to 24 in just a few months without any apparent reasons. Urinary Albumin Levels: >4400 mg/L – Indicating severe protein presence, potentially nephrotic syndrome. Creatinine Levels: 231 (Elevated), Serum Albumin: 26 (Decreased), Total CO2: 18 (Possibly indicating metabolic acidosis). 🔹 Distrust Toward My Endocrinologist & Medical Oversights I harbor significant doubts about my endocrinologist's care, feeling neglected as she seems eager to discharge me after disregarding my case for over a year. During my steroid treatment, my blood sugar soared, but she never examined me during that critical period. After missing a single appointment in June, my next consultation was intentionally rescheduled for 11 months later, despite an earlier appointment slated for February 2024. I eventually met with her for the first time on March 21, 2025 – one year post-steroid treatment – during which I had already suffered vision loss in my left eye. 🔹 Vision Impairment & Continued Medical Disregard I have now been informed of potential macular degeneration, but prior to this, I only required glasses. I also experienced a vitreous hemorrhage, which seems to be the primary factor behind my vision issues. Confusion among the medical team persists, and I find myself in limbo, waiting for a second opinion. 🔹 Investigating Causes of Kidney Deterioration & Seeking Help My medical history includes frequent infections, abscesses, and inflammation that were never thoroughly explored. When I went to the hospital for abscess treatment, I was not tested for sepsis; could chronic bacteremia be a factor in the kidney damage? Additionally, I worry about the effects of NSAID toxicity, as I have been using Naproxen since my teenage years due to ongoing pain and infections. Might there be a connection between my kidney issues and vision loss? 🔹 Questions Needing Answers 1. Could my history of chronic infections, sepsis, or NSAID toxicity be causing my FGN and kidney failure? 2. Is plasmapheresis an effective treatment for FGN given my rapid decline? 3. What immediate actions should I pursue since my eGFR is dramatically decreasing? 4. Should I be concerned about untreated chronic bacteremia? How can I conduct proper testing? 5. Are prolonged wait times for specialist consultations endangering my kidney health further? I am aware that I need a second opinion from a nephrologist and have already contacted a retinal specialist. However, the wait times for rare conditions like mine are distressingly long. I feel as though my situation is being overlooked, and I am unsure of the next steps. At present, I am on medications including Lasix, Telmisartan, and dapagliflozin. I am managing high blood pressure with substantial swelling, having lost 15 of the 71 lbs of excess water weight. I would greatly value any advice you might have—thank you for your support!
Answers (1)
3/23/2025, 12:10:50 AM
OpenHealth AI
I'm truly sorry to hear about the severe health challenges you're facing. It's understandable to feel overwhelmed given your complex medical situation. Let’s focus on your key concerns regarding your kidneys and vision, and outline the most immediate steps you can take.
Main Points:
- Potential Causes of Kidney Issues: Chronic infections, NSAID use, and untreated conditions may play a role in your kidney decline.
- Treatment Options for FGN: Discussing plasmapheresis with a nephrologist is crucial.
- Urgent Actions: Focus on securing timely care and monitoring your health closely.
Explanation:
Fibrillary Glomerulonephritis (FGN) can be complicated, and your history of chronic infections and NSAID use might contribute to kidney damage. NSAIDs, especially when used long-term, can affect kidney function. Additionally, untreated infections or conditions like chronic bacteremia can lead to systemic issues, impacting kidneys and possibly contributing to your vision problems.
Next Steps:
-
Urgent Nephrology Consultation:
- Prioritize seeing a nephrologist, as they can provide specialized treatment options for FGN, including plasmapheresis, which has shown effectiveness in some patients. You may need to insist on an expedited appointment given your rapid decline in eGFR.
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Monitor Symptoms Closely:
- Keep track of your symptoms, especially any changes in swelling, urine output, or any signs of infection. Documenting these can help your medical team understand your condition better.
-
Testing for Chronic Bacteremia:
- Ask your primary care physician or nephrologist for blood cultures and other tests that can evaluate potential chronic infections. It’s important to rule out any ongoing bacterial issues that may be impacting your kidney health.
-
Consider Medication Review:
- Discuss all your medications with your healthcare provider. They may consider adjusting or reviewing NSAID use in light of kidney function concerns and your health history.
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Get a Second Opinion:
- Reach out to other nephrologists or institutions known for kidney disease to seek a second opinion, especially about your treatment plan and management.
-
Eye Care:
- Follow up with your retinal specialist about your vision issues. It’s vital to address the potential macular degeneration as soon as possible to preserve your vision.
Additional Considerations:
- Support System: As you navigate these challenges, assembling a support network—whether it’s family, friends, or patient support groups—can alleviate some feelings of being overwhelmed.
- Emergency Care: If you experience severe symptoms like extreme swelling, difficulty breathing, or new vision problems, seek emergency medical attention.
Your concerns are valid, and it’s important to advocate for yourself as you seek the necessary care. Please let me know if you’d like further information on any of these points.
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