Cirrhosis Support Group

I don't know if the HE is the cause But I do know it's getting on my nerves.

I'm no longer "Allowed" to cook alone , walk alone , be home alone , shucks if I'm too long in the bath room someone's knocking on the door asking "are you all right". LOL

I know it's because they care but it's still frustrating

My ammonia range should be 11-35 and currently i'm at 90. I am feeling side effects such as memory loss and confusion. So Gail how do I obtain this documented proof? Is this something someone somewhere forgot to tell me? What if by the time I am needing a transplant I dont have 6 months? Whatever my doctor orders I do it.

Randy

First if you can ask your "mandatory psychologist" to order regular random testing and to document the results.

If you are already being seen in a transplant center they probably are already checking it. Ask Your coordinator.

If you haven't been referred yet Ask for a referral. You don't have to be ready to transplant yet. You can also see a GI or Hepatologist at a transplant center.

Whom ever your Dr is can do random testing for you. Always keep copies.

Thank you very much Gail. I do keep all copies of medical records. It has benifieted so many times doing so. It's a common recommendation I make as well. I'm not ready for transplant but it seems to be a path my doctor feels I will need to take eventually.

I will discuss this will my Doctor next week, Thank you again

My husband has issues with short term memory too- his last ammonia level was 70. A nurse told me to have him write his name down. Seems silly, but she said that is a good way to see when toxins affect your brain. But we go to the doctor so much his levels are getting checked constantly I would have him in the ER before it got that bad. TamieJP - there is a local ammonia level- what does that mean?

Vegas555, it's been a while since I put this out, and there seem to be several new members, so I'll restate what was important to us to keep track of my encephalopathy. My wife had me keep a daily log including: daily weight, time I took my lactulose and a tick for each bowel movement. She could then check my writing, how well I was doing with my medication and elimination. She could chekck this daily when she got home from work and increase my lactulose if needed.

Another test of brain function, besides the signature, is drawing a five pointed star without lifting the pencil. When the level of encephalopathy increases it the star becomes erratic, not closing, or just a circle.

Hey all,

A couple of things. The alcohol question. Ya I get that alot too. I have Primary Biliary Cirrhosis which is a disease of the bile duct but the magic word cirrhosis has resulted in many people asking about alcohol use.

As for the HE. I haven't had that yet (that I know of ) but I do fear that alot. I know if I have ascites or varisites to go to emergency.....if I have HE I won't know enough to go to emergency! And what scares me is having a documented history of depression, a trip to emergency will mean they think I am delusional or something and request a psych consult, which could take so long that the HE becomes very serious. I do see a psychiatrist, she treats the depression and we talk alot about my illness. She gave me a letter to carry stating that if I end up in emergency with 'seemingly psychiatric symtpoms' that is likely organic, caused by PBC. She also gave me a copy of the "Mini Mental Status Exam"....from the DSM 4R (psychiatric bible)to give to my employer and family...to give back to me if they suspect HE. It has simple questions such as repeat 3 words, fold a paper, count backward by 7 from 100, etc to assess mental functioning. With her letter and those around me having a way to assess me I do feel better. However I have also been told to wear a medical alert bracelet. Do any of you wear one?

Vegas you asked me: "TamieJP - there is a local ammonia level- what does that mean?"

I mean each individual laboratory might have it's own level of 'normal'. The lab that my husband, Mark, goes to is 0-33. Someone posted that 50 was within normal limits. It would not be at our lab. It just helps to ensure that you understand if your ammonia level is within normal or not. The different labs might use different machines, chemicals or something that makes the LEVEL of normal count differently.

In other words, always check your own lab tests AGAINST THAT SAME LABS NORMS.

I hope I made that clear.