Liver Disease Information for Friends and Family: What You Need to Know
This page is designed for individuals who may have a relative or friend with some for of liver or digestive disease. Additional information on specific diseases and disease management can be located on the page For Patients.
In most situations, I have noticed over the years that friends and family members are not so much interested on the disease, but what they can do to assist this individual in need. Below I have listed general guidelines how you can be of assistance.
Simple, unbiased support is many times greatest gift you can provide someone with. Listen to their complaints, and act as a sounding board. Don’t be judgmental. Provide them with honest advice when they ask for it.
If appropriate, make yourself available to drive them to the doctor’s office or hospital, shopping, or a run to the pharmacy.
Be Part of Their 24-Hours Care Plan
Patients that are being evaluated for liver transplantation are required to have a 24-hour care plan. Our liver transplant social worker interviews patients and their families to see what their needs are. Specifically, we need to see that a patient being considered for transplant has adequate social support. If not, this could be grounds for being deemed inappropriate for transplant. Parts of this care plan calls for adequate transportation to and from office/hospital appointments, proper monitoring of medications and overall condition of the patient, and adequate communication between the patient, their family/support, and the transplant team.
All About Diets: Low Salt Approach
The one thing to remember about the proper diet if you have liver disease, is that it needs to be low salt. Those with liver, kidney, heart, and lung disease have to be especially concered with excessive dietary salt. The Standard American Diet (aka SAD) has about 3,500 to 4,000 mg of sodium daily. Keep in mind most experts, including Dr. Galati, feels that the upper limit should be about 1,500 mg/day. The only way to reatch this goal is to eat fresh vegetables, fresh fruits, and lean, fresh meat and fish. Anything in a can, box, or bag will be loaded with salt.
Watch Dr. Joe Galati's latest video on salt.
Understanding Hepatic Encephalopathy
Hepatic encephalopathy is a confusion state that develops in patients with advanced liver disease. Neurologic and psychiatric components can occur, and no two patients are the same.
Encephalopathy develops due to a build-up of “toxins” in the blood that cross into the brain. The effects can range from difficulty performing simple routine math calculations, memory loss, increased sleeping, personality changes, appearance of depression, profound fatigue, through coma. An assortment of situations can precipitate hepatic encephalopathy, including, but not limited to infections, dehydration, head injury, bleeding, or excessive medications that case sedation.
Therapy is geared towards reversing the situations stated above, as well a treatment with a medication called lactulose. Lactulose is syrup made from a sugar the human body cannot fully digest. It is sweet to taste (almost sickening), and causes increased gas, bloating, and diarrhea. The presence of diarrhea shows that it is working. The daily dose of lactulose typically starts at 2-3 tablespoons twice daily. In most situations, we request that patients have 2 to 3 loose bowel movements/day. If not, more lactulose needs to be administered.
From a family and friend standpoint, you need to be aware of the following:
- Changes in personality may mark deterioration of liver function
- Liver transplantation may now need to be considered
- Patient safety regarding staying home alone needs to be discussed
- Patients with hepatic encephalopathy in the later stages should not drive or operate heavy/dangerous machinery
- They will likely need help organizing and taking their medications
- Avoid all sedatives
- Contact their physician immediately if the encephalopathy gets worse
- Escort them to physician visits and take notes for them regarding instructions they may receive.
What Precautions Need To Be Taken?
I am commonly asked about “catching” something from an individual with liver disease. Generally speaking, the only disorders that can be transmitted will be viral hepatitis, and they vary based on which type they have.
Hepatitis A can be transmitted by casual contact, but by the time the patient has symptoms, they are usually no longer contagious. As always, this is a great excuse to have yourself tested and immunized.
Hepatitis B is transmitted through close personal/sexual contact, and exposure to blood or body fluids. Similar to hepatitis A, get tested and vaccinated. Such close contact would put you at risk for developing hepatitis B. Casual contact, such as with co-workers, neighbors, and family members poses no additional risk. I cannot emphasize the value of screening and vaccination.
Hepatitis C, compared to hepatitis B, is poorly transmitted through sexual contact. It is estimated that the sexual transmission risk in long-term sexual partners is approximately 4%. Casual contact is almost never heard of. We recommend individuals not share razors, toothbrushes, or other personal care items, and to appropriately cover open cuts and wounds. There is no reason to “quarantine” individuals with hepatitis C. These individuals do not require special eating utensils or disposable cups when you are around them. No special precautions need to be taken regarding the work or school environment either. It is OK to hug or be hugged by someone with Hepatitis C.
Accompanying Patients To The Doctor: Questions To Ask And Note Taking
Here is a link to a printable form you can bring with you to the physicians office to assist in asking the proper questions and record changes in medication of therapies. Use this form as a general outline in assisting your family or friend.
Being A Living Donor
The ultimate act of assisting a friend or loved one facing a serious illness is to volunteer as a “living donor”.
The vast majority of liver transplant performed in the Unites States, including Houston, are performed by obtaining a liver from an individual who has requested to be an organ donor. These donors have suffered irreversible brain injury, and have been declared brain dead by a standard protocol. These cadavaric (from cadavers) donors can provide organs from numerous patients waiting for transplant, including liver, heart, lung, kidney, pancreas, small intestine, as well as tissue for skin grafting, and bone.
At Houston Methodist Hospital, we have recently been given approval for living related liver transplantants. Dr. Galati is the medical director of this program, and working with Dr. Mark Ghobrial and rest of the liver transplant team, this will be an available option in select cases to consider. Keep in mind that the selection process is far more intense with living related transplant, and added caution is given to each case.
In living donors, a healthy individual donates a portion of their liver to then be transplanted into the recipient. Initially, this type of transplant was only used in pediatric liver transplants, where a parent or relative donated the liver. Over time, due to the shortage of donor livers and the growing list of adults needing liver transplant, this liver donor transplant program has expanded. A much larger portion of the liver needs to be removed from the healthy donor and transplanted into another adult, increasing the risks associated with this procedure.
Basic requirements to be a liver donor for a liver transplant included the following:
Similar blood type of the recipient
Adequate size of the donated liver
- Proper weight and body mass index
General good health
No history of alcohol or drug abuse
No current or past history of emotional or psychiatric disorders
A normal liver biopsy
Normal anatomy of the liver and blood vessels
Understanding and accepting the risks involved
There are unfortunately insurance and financial issues related to this procedure, and in many situations, the insurance companies are unwilling to pay for this procedure. Our financial counselors will sort these issues out to see what individual policies say about living donor transplants. Nationally, only 17-20% of individuals evaluated for live donors are ultimately approved. Potential donors are excluded at various steps along the evaluation process.
My recommendations are to discuss liver donor if appropriate, keeping in mind that only a small percentage of cases make this an appropriate option for your family member or friend.
Nutrition and Liver Disease
This is a large topic of discussion you will have with Dr. Galati and his team. Good nutrition is vital to improved outcomes in patients with liver disease. Make sure you visit Dr. Galati's supporting website for information about his new book, Eating Yourself Sick, for more extensive nutrition information. Anna Stuckly, the practices Registered Dietition-Nutritionist, is available for nutrition consultations.