Navigating Kidney and Liver Failure: Seeking Guidance on Specialist Consultation
Hello everyone, I'm reaching out because I've been dealing with hepatorenal syndrome type 1 (HRS AKI) for nearly three years now without the option of a transplant, relying solely on dialysis. In May 2022, I ended up in the hospital where doctors told me my prognosis was grim — they estimated I had no more than a week left due to cirrhosis, with a MELD score of 36. I tried to remain optimistic despite the overwhelming challenges. I've endured severe gastrointestinal bleeding, causing my weight to plummet to just 66 pounds, and I looked as though I were carrying twins. I suspect I suffered from spontaneous bacterial peritonitis (SBP) and possibly MRSA as well. Before all this, I experienced ongoing hepatic encephalopathy, coma episodes, and kidney failure among numerous other issues. There was a moment when I realized I had lost some physical attributes, feeling like a plastic doll, which felt surreal. Earlier that day, I joked with a nurse that things couldn’t possibly get worse — little did I know how wrong I was to think that. In a hospital setting, things can always shift for the worse, yet they can also improve. Although I've seen some improvements, it hasn’t been an easy journey, and I feel like I may have sustained some brain damage, but I suppose that’s something I’ll determine once I can get a transplant. Over the past year, I've started experiencing abrupt night awakenings due to a chilling sensation that culminates in uncontrollable shaking. This intense cold can affect my limbs, face, and chest, while my back often feels unnaturally warm and pulses with discomfort. Recently, during one episode, I was shaking so violently that my body crimped up, leaving me like this for several minutes until my family could pile blankets on me. Additionally, outside of these chilling episodes, I often feel immobilized, like I have limbs that have fallen asleep. I even experienced nausea during one of these incidents, though I’m unsure if that was connected. I've been prescribed prazosin for some relief, but I stopped taking it as it made my already low blood pressure worse. I’ve also had my vitamin D levels checked alongside thyroid blood tests. Unfortunately, I’ve adhered too rigidly to one hospital for the double transplant, and I’m debating making a change since neither my GI or nephrologist seems to take my symptoms seriously. Their response has been to insist my blood work looks excellent and then send me on my way. I realize the situation might sound trivial—"I get cold at night and shake! My back, however, is hot!"—but it’s becoming increasingly troubling. I often receive the advice to simply turn over and grab a blanket or wear warmer clothing. Yet, intensity of the shaking continues to escalate, and the last episode left me feeling thoroughly exhausted. My jaw locked while I endured chest cramps, resembling a hostage with my 'T-Rex' hands, rather humorously. One of the more disheartening aspects is the lack of others who have navigated this complex situation for as long as I have. It feels like no one knows how to parse through these symptoms effectively, leaving me without a community for sharing experiences or garnering insights. I can only obtain statistics that pertain to the initial few months of this condition from those assisting me. I suspect that circulation issues — perhaps related to poor regulation or hypotension of the portal vein — contribute to my symptoms. If I can manage to warm up quickly after experiencing the sudden jolts that wake me, I sometimes can avert the impending episode, but lacking that, my condition will worsen quickly. These episodes last anywhere from 10 to 30 minutes and have occurred approximately once a month for the last year, starting towards the end of summer. To anyone reading this, I wish you strength, regardless of whether you have advice or direction to offer. I apologize for the length of this post; unfortunately, it’s a testament to what I’ve been through. Thank you for taking the time to read my experiences.
Answers (1)
7/1/2025, 3:40:52 AM
OpenHealth AI
I'm truly sorry to hear about the difficulties you are facing with your health. Your experiences and symptoms sound incredibly challenging, and it’s understandable that you're seeking clarity and support. Let's break down the situation to address your primary concerns and provide actionable steps.
Main Points:
- Complex Symptoms: You are experiencing severe episodes of coldness, shaking, and discomfort in conjunction with renal and hepatic issues.
- Concerns about Specialist Care: You seem to feel that your current healthcare providers may not be taking your symptoms seriously, leading you to consider seeking new consultations.
Explanation:
Your situation, involving hepatorenal syndrome, cirrhosis, and possibly related autonomic dysfunction, can lead to a variety of symptoms including chills, shaking, and abnormal temperature sensations. This could be due to issues such as poor blood circulation, hypotension, or disturbances in your autonomic nervous system.
Given your history of severe gastrointestinal bleeding and hepatic encephalopathy, it is critical to address any symptoms that affect your quality of life, especially after experiencing significant physical changes.
Next Steps:
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Symptom Tracking:
- Keep a detailed diary of your episodes, noting the timing, duration, symptoms experienced (e.g., temperature changes, shaking intensity, associated symptoms like nausea), and any potential triggers. This can help establish patterns and provide essential insights for specialists.
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Evaluate Care Options:
- Begin researching other healthcare facilities or specialist centers that focus on liver and kidney conditions. It's crucial to find providers who are responsive to your concerns. You might seek places known for comprehensive care in liver disease and renal failure.
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Request a Comprehensive Evaluation:
- When you find a new specialist, ensure you communicate all of your symptoms and concerns, including the shaking episodes and any perceptions of neurologic changes. Ask for a thorough evaluation of both your hepatic and renal functions alongside neurological assessments to rule out any comorbid conditions affecting your symptoms.
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Support System:
- Consider joining support groups, either online or in-person, for individuals with similar conditions. This can provide not only a space for sharing experiences but also emotional reinforcement from those who understand the complexities of your situation.
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Lifestyle Adjustments:
- While it’s understandable that these suggestions might seem basic, keeping your living environment warm and layering clothes, along with taking other measures to prevent cold exposure, can help manage the chill episodes. This could include using heating pads or electric blankets during the night if it helps you feel more comfortable.
Please remember that your symptoms are valid and deserve thorough exploration by attentive healthcare providers. You are not alone in this journey, and there are paths to finding better management for your condition. Keep advocating for yourself – your health matters!
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