OpenHealth Q&A

Contemplating My Sister's Medical Records: A Journey for Closure

This is a lengthy post and may contain some sensitive content. I appreciate your willingness to read and respond. Three years ago, my sister, then just 19, tragically passed away due to multiple organ failure following a liver transplant. The experience in the hospital was overwhelming and confusing, resembling a turbulent ride full of ups and downs. I feel a strong need for closure and have considered examining her medical records to gain a clearer understanding of what transpired. However, I've heard that this process can be distressing, leaving me uncertain about what I might encounter. Thus, I'm reaching out to learn about what I might expect to find in her records. The rapid decline in her health began less than a month before her death when she started experiencing severe abdominal pain and discomfort. Although she had been diagnosed with irritable bowel syndrome (IBS), our doctors largely dismissed her symptoms, only advising against spicy foods. Her discomfort became so intense that at times she would be unable to stand, requiring potent pain relief at the clinic. Throughout that month, she made multiple visits to the doctor, yet no definitive tests were conducted—just instructions to avoid solid foods and see how things progressed. As her condition worsened, it became apparent that she was experiencing notable fatigue and swelling. Although she struggled with bowel movements, we attributed that to her IBS. At that point, she had a brief and recent history of drug use (though it was later ruled out as a cause for her liver failure). Her substance use included ecstasy, marijuana, and cocaine over a six-month period, but she had been sober for around a month before her hospitalization. Five days before her passing, she called for an ambulance due to crippling pain and a high fever nearing 39 degrees Celsius. Upon arrival at the emergency room, my mother accompanied her for support. They endured a five-hour wait, during which my sister vomited repeatedly while suffering on the waiting room chairs. Eventually, a doctor informed them that the health care center was closing for the night and recommended they go to the hospital. My mother insisted on an examination for a potential ectopic pregnancy. Following my sister's urinalysis, my mother expressed concern as the sample appeared discolored. The physician dismissed this, citing dehydration from vomiting, and no further tests were conducted. At the hospital, they provided a note from the doctor to expedite her examination, but upon arrival, the first nurse informed them that they would have to wait, just like everyone else. Another five hours of waiting ensued, during which my sister's condition deteriorated significantly, culminating in her pleading to go home due to her exhaustion. The following morning, I was awakened by agonizing screams of pain. We rushed her back to the hospital, where we discovered that the blood tests scheduled for the night prior had not been performed. Within minutes of arriving, tests revealed that her liver enzymes were alarmingly elevated, nearly reaching 10,000. She was promptly admitted. Unfortunately, we did not acquire much information that day. On the third day, we received a call indicating that she was being transferred to a specialized unit for liver issues and that without a transplant, she was likely to succumb over the weekend. This news came on a Friday. After reaching the new hospital, the attending physicians reassured us that the situation wasn’t as dire as we feared, claiming they had various options left to consider. After allowing my sister to rest, we left the facility, only to receive a call later that day urging us to return as she needed emergency treatment. At her side one last time while she was conscious, we saw that she had vomited blood and required medication for irregular heart rhythms. We exchanged our goodbyes, filled with apprehension and concerns over the potential causes of her condition, suspecting drugs might be involved. Later, we learned that her liver had been attacked by a rare strain of the herpes virus; she was placed on a MARS system for dialysis. Tragically, the blood thinners led to her bleeding from her skin, and we were warned that without a new liver, her situation was critical—but her drug history would necessitate careful consideration regarding her eligibility for transplantation. On Saturday, we learned that she had been placed at the top of the transplant list in our region. We spent the day waiting for updates as her condition fluctuated. Late Sunday night, we were informed that a liver had been located, and surgery was scheduled for Monday morning. The operation was successful, and the new liver began functioning. However, because she was significantly swollen, doctors could not close her up afterward, but we remained optimistic. At 4 a.m. on Tuesday, we received distressing news urging us to return as her health had declined. Following another surgery, we were informed that she was stable but that a section of her small intestine had died and required removal. Doctors stated that other specialists would evaluate her vascular health. Just two hours later, we received heartbreaking news—her body was beginning to fail, with no blood circulation to her legs, and further interventions were futile. She had suffered strokes, and her heart was in distress. We ultimately made the unbearable decision to discontinue support for her heart, allowing her to pass around midday Tuesday. Tragically, the only organ found to be healthy was the liver she had just received. To this day, we remain in the dark about how the herpes virus managed to compromise her liver. It was a type she could have contracted on her lips, yet she showed no observable flare-ups and was entirely unaware of its presence. I would greatly appreciate any insights or information regarding this situation, particularly regarding what might be included in her medical records should I decide to delve into them. Thank you for your support.

Answers (1)

2/15/2026, 12:31:09 AM

OpenHealth AI

I'm deeply sorry for your loss and understand your desire for closure regarding your sister’s medical journey. Delving into her medical records can be a vital step in understanding the events that transpired, though I recognize it may also be emotionally challenging. Here’s what you might find in her records and some steps you might consider moving forward.

Main Points:

1. Medical Records Content: You may find detailed notes on hospital visits, diagnoses, lab results, imaging studies, treatment plans, and medication lists.
2. Possible Emotional Impact: Reviewing these records can be distressing; it's crucial to be prepared for the emotional response you may encounter.
3. Next Steps for Closure: Consider how to approach reviewing her records thoughtfully, and explore avenues for support if needed.

Explanation:

Her medical records will typically include:

• Consultation Notes: Observations and assessments from doctors during each visit might reveal concerns about her symptoms, as well as any diagnostic reasoning.
• Lab Results: Elevated liver enzymes and any blood tests conducted will likely be documented, providing clarity on her liver function over time.
• Imaging Studies: If any scans (like ultrasounds or MRIs) were performed, their findings may shed light on her condition.
• Treatment Summaries: Details on medications administered, including pain management strategies and responses to treatment, will be included.
• Discharge Summaries: These often summarize key information from her hospital stays, including diagnoses made and plans for follow-up care.

Priority Next Steps:

1. Requesting the Medical Records:

   • Contact the medical facilities where your sister received care to understand their process for releasing medical records to you.
   • Be prepared to provide personal information and possibly a reason for the request, as privacy laws protect patient information.

2. Set a Comfortable Environment:

   • Choose a quiet space and set aside adequate time for reviewing the records to minimize distractions.
   • Consider having someone supportive with you, whether it’s a family member or a close friend, to help process the information.

3. Seek Professional Support:

   • If you anticipate emotional difficulty in reviewing the records, consider speaking with a mental health professional before or after you review them. They can help you navigate feelings of grief and confusion.

4. Focus on Clarifying Uncertainties:

   • Specifically look for sections that discuss her symptoms leading up to the transplant and any information on the diagnosis of the herpes virus affecting her liver. This is crucial in answering the question you have about how the virus compromised her liver.

5. Follow Up with a Health Professional:

   • If you can, discussing findings with a healthcare professional might provide clarity on terms or treatments mentioned in the records that may be confusing.

Closing Thoughts:

The pursuit of understanding her medical history is a significant step towards processing your loss. Remember to be kind to yourself as you undertake this journey. It's natural to feel a mix of anticipation and anxiety. Please don't hesitate to seek help if you need additional support navigating your emotions and insights from her records.