Coping with Cirrhosis: A Family's Struggle for Hope and Care

Cirrhosis ~ Helpless Family Members

Hello Dr.
Lee,
My brother is only 45 years old and has developed cirrhosis due to excessive smoking and drinking, along with long-term night shift work.
He is currently hospitalized and has been there for a month.
In the first few days of his hospitalization, the attending physician issued a critical condition notice and provided us with a do-not-resuscitate form to sign.
He mentioned that cirrhosis progresses to hepatic encephalopathy and seems to be untreatable.
However, over this past month, my brother has regained consciousness but remains very weak.
Despite multiple blood tests showing no improvement, the doctors have indicated that the National Health Insurance Bureau is pressuring them to discharge him.

We feel helpless because he is alert and able to eat, consuming porridge and fruits.
However, I do not see any proactive treatment from the hospital; they are only administering antibiotics and glucose daily, and they have asked us to pay out of pocket for albumin injections (over two thousand NT dollars per bottle), which he receives for three to six days at a time.
I really don’t know what to do.
How should we care for him after discharge? Is there truly no hope from the hospital's perspective? I hope Dr.
Lee can provide some guidance on what we should do.
Thank you!

Awei, 40~49 year old female. Ask Date: 2008/12/08

Dr. Li Xuanshu reply Gastroenterology and Hepatology

Hello, based on the information provided in the letter, your brother's liver cirrhosis has become quite severe.
It is unclear whether your brother has hepatitis B or C, in addition to his smoking and drinking habits.
Cirrhosis is a slow inflammatory process, so reaching this stage indicates that it has been ongoing for a long time.
Therefore, recovery is not something that can be achieved in a short period.
Furthermore, cirrhosis itself is a disease characterized by liver function decline; once liver function is significantly impaired, it is very difficult, if not impossible, to restore.
At this stage, only symptomatic management can be provided.
For instance, if there is ascites, albumin supplementation may be necessary, and if there is hepatic encephalopathy, lactulose may be required.
Once consciousness is clear and vital signs are stable, he can rest at home.
Complications of cirrhosis, once they occur, can recur, so family members should be psychologically prepared.
If a situation arises at home similar to this hospitalization, the only option would be to go to the emergency room for urgent care, making it important to live near a hospital.
The only way to address your brother's current condition is through a liver transplant; I wonder if the doctor has discussed this option.
If you have any questions related to liver disease, feel free to call the toll-free number 0800-000-583, and our specialists will be available to assist you.

Reply Date: 2008/12/08

More Info

Coping with a family member's serious illness, such as cirrhosis, can be an incredibly challenging and emotional experience. Your brother's situation, marked by excessive alcohol consumption and the pressures of a demanding job, has led to a severe health crisis that not only affects him but also deeply impacts your entire family. It’s understandable to feel helpless and overwhelmed in such circumstances.

Firstly, it’s important to recognize that cirrhosis is a progressive disease that can lead to liver failure, and the prognosis can vary significantly from one individual to another. The fact that your brother has shown signs of improvement, such as being alert and able to eat, is a positive sign. However, the uncertainty surrounding his condition and the hospital's approach to treatment can be distressing.

In many cases, the management of cirrhosis involves addressing the underlying causes, such as alcohol use, and providing supportive care. This may include medications to manage symptoms, nutritional support, and monitoring for complications. The use of antibiotics and albumin, as you mentioned, is part of managing potential infections and maintaining fluid balance, which is crucial in patients with liver disease.

If you feel that the care your brother is receiving is insufficient or lacking in aggressiveness, it may be beneficial to seek a second opinion from another hepatologist or a liver specialist. They can provide a fresh perspective on his treatment plan and may suggest alternative therapies or interventions that could be more effective. It’s essential to advocate for your brother’s health, especially when you feel that the current medical team is not meeting your expectations.

Regarding post-discharge care, it’s vital to have a comprehensive plan in place. Here are some key points to consider:
1. Dietary Management: Patients with cirrhosis often require a special diet that is low in sodium and rich in nutrients. Consulting with a dietitian who specializes in liver disease can provide tailored dietary recommendations.

2. Monitoring Symptoms: Keep a close eye on any changes in your brother's condition, such as signs of confusion, jaundice, or swelling. These could indicate complications that require immediate medical attention.

3. Medication Management: Ensure that you understand all medications prescribed for your brother, including their purposes and potential side effects. This knowledge will help you manage his care effectively.

4. Support Systems: Emotional and psychological support is crucial for both your brother and your family. Consider involving social workers or counselors who can provide resources and support for coping with the emotional toll of chronic illness.

5. Follow-Up Care: Schedule regular follow-up appointments with a healthcare provider who specializes in liver diseases. Continuous monitoring is essential for managing cirrhosis effectively.

6. Alcohol Abstinence: If alcohol consumption is a contributing factor to your brother's condition, it is critical to support him in abstaining from alcohol. This may involve counseling or support groups.

7. Education: Educate yourself and your family about cirrhosis and its management. Understanding the disease can empower you to make informed decisions about your brother's care.

In conclusion, while the journey ahead may seem daunting, there are steps you can take to advocate for your brother’s health and well-being. Seeking additional medical opinions, ensuring proper post-discharge care, and providing emotional support can significantly impact his recovery and quality of life. Remember, you are not alone in this struggle; many families face similar challenges, and there are resources available to help you navigate this difficult time.

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