Mother suffering from massive brain fog. Anyone else experience this?

[HepCdaughter]

Hello!  My mother contracted Hep C in 74 from a blood transfusion.  She tried the Peg Intron/Ribavirin treatment about 3 years ago and wound up having a liver hemorrhorage.  She then had to have a TIPS procedure and has been on Lactulose ever since to help rid the toxins from her body.  She has gone downhill since about June of 2014 and started Harvoni in November.

While I have seen some improvement in her, she has massive brain fog in the evenings.  She will ask strange questions and seems very confused, like an Alzheimer patient. 

Anyone else experience this?  Anyone else had a TIPS?

[Lynn K]

Hi HepC Daughter

Unfortunately you mother likely is suffering from Hepatic Encephalopathy (HE) which is being treated with Lactulose. The goal with Lactulose treatment is to find the fine balance that she should be having two to three soft bowel movements a day but not diarrhea like as that can lead to dehydration which can also cause HE episodes.

Here is a link to some info about HE:

http://he123.liverfoundation.org/diagnosis/what-are-the-stages-of-he/

What Are the Stages of Hepatic Encephalopathy?

The severity of HE is judged according to your symptoms. The most commonly used staging scale of Hepatic Encephalopathy is called the West Haven Grading System:

Grade 0: Minimal HE
This stage is very hard to detect as changes in your memory, concentration and intellectual functioning are so minimal that they may not be outwardly noticeable, even to you. Coordination can be affected and although subtle, may impact your ability to drive a car.If you recently had poorer performance at work or have committed a number of traffic violations while driving, it would be worth bringing this to the attention of your healthcare provider. You may be referred for special testing, called neuropsychiatric testing, to evaluate your thinking abilities by doing a number of specifically designed tasks with a trained examiner. If your test reveals some deficits, your healthcare provider will likely schedule frequent follow-up visits to closely follow your condition. There are currently no medications approved by the FDA to treat minimal HE.

Grade 1: Mild HE
You may have a short attention span, notice mood changes like depression or irritability, and have sleep problems.

Grade 2: Moderate HE
You may keep forgetting things, have no energy and exhibit inappropriate behavior. Your speech may be slurred and you can have trouble doing mental tasks such as basic math. Your hands might shake and you can have difficulty writing.

Grade 3: Severe HE
You may be confused as to where you are or what day it is and be extremely sleepy, but can still be woken up. You may be unable to do basic mental tasks, feel extremely anxious and act strangely.

Grade 4: Coma
The last stage of HE is when the person becomes unconscious and slips into a coma.

The TIPS procedure (Transjugular Intrahepatic Portosystemic Shunt) is used to relieve high blood pressure in the primary vein in the liver called the portal vein. The high blood pressure happens because of how badly scarred the liver is it creates resistance to blood flow.

Here is a link about TIPS
http://www.nlm.nih.gov/medlineplus/ency/article/007210.htm

Unfortunately a possible risk of the TIPS procedure is an increased chance of developing HE.

I hope your mother is under the care of a Hepatologist associated with a Liver Transplant center. From what you have said your mother's condition is very advanced and she should be evaluated for a liver transplant. If you are her care giver you should go to all appointments with her so you will know what is going on and what her prognosis is.

I have added a link Tips for Caregivers from the American Liver Foundation.

http://www.liverfoundation.org/patients/caregivers/

These sites I have sent have a wealth of information I know it is overwhelming at this point all this information and your worries for you mom. Just take it one day at a time and come back with any questions we are here to help if we can.

One thing you should ask her doctor is what is her MELD score. The MELD is a composite score based on 3 different blood test results it is how patients are ranked on the Liver Transplant list by the severity of their symptoms as determined by her blood test results. I would also recommend you get copies of all her lab tests so you can see what is going on we can try to help you understand them as well. If you can find out her results for these tests we can figure out her MELD score. The tests are INR which is a test of blood clotting time, her bilirubin, and her creatinine.

My best wishes to you both