sharon_teammarian

Just wanted to close out this post. We did indeed find out that mom has hepatic encephalopathy. Luckily we caught it early enough that she can start treatment with lactulose and with prevacid.

Thanks so much to to Patty and Walk for suggesting it as it turned out to be exactly that.

Here’s hoping we’ll see improvement in her short-term memory and confusion soon.

Thanks again!!!

We went to the doctor today. As suspected her bloodwork showed many counts were too high and too low. Her bilirubin is high but we know she will always probably have some level of jaundice. The key was the ammonia level which along with all the other symptoms she exhibits, confirm that mom does have hepatic encephalopathy.

The good news is that it is not so far advance that the symptoms can’t be managed and even – hopefully – somewhat reversed. She starts lactulose and prevacid tomorrow but she still refused the prescription pain medicine as today she is feeling better again and wants to keep trying to manage with tylenol when she needs it. Her doctor has set up more frequent regular visits (every two weeks) to keep a closer eye on mom’s pain management and has also ensured bloodwork be done at least once a month.

Does anyone have any input of vaccines? Mom had her regular flu shot today and will have the H1N1 shot next week. The doctor also mentioned a pneumonia vaccine given her compromised immune system.

The doctor mentioned that suggesting hepatic encephalopathy was helpful and was glad I had done so. I told her about this site and discussion board and how it’s been such a source of information for us and also suggested she research some of the more well known centres that treat CC.

We also touched on briefly the fact that it is likely that the hepatic encephalopathy will continue to progress and that it may eventually lead to coma. But – one day at a time.

Today was a good day. We had such a lovely visit and mom made a major leap forward in accepting some daily medication for the first time.

Now let’s hope we see some results and her confusion and short-term memory improve some.

Thanks again all of you for the support and advice. We might have never gotten to this diagnosis without the responses to my first post

Thank you all for your warm welcome. The last 3 months have been somewhat surreal.

I am amazed at how fast this has all happened. While it felt like this disease came out of nowhere, looking back we (my sibs and I) notice many clues but they were so vague. Everyone – including my mom’s family physician – attributed her symptons to something else: pain to her shoulder surgery, general malaise and feeling “off” to dealing with chronic pain and just getting older. Even when she began to get itchy, both she and her doctor felt it was an allergic reaction to advil which she had been taking regularly on the advice of her orthopedic surgeon (she had 6 of the 7 listed side effects). It wasn’t until she had jaundice that she went for her first ultrasound. Then everything happened with great speed. Ultrasound on Monday, ERCP on Tuesday followed by acute pancreatitis, CT scan on Wednesday, bypass stent insertion on Thursday.

When she had the CT scan, they noticed a larger tumor in her lower abdomen. Her specialist at the time said that is “not uncommon” with CC to see what he described as a satellite tumor. Apparently they occur in about 25% of cases and are generally benign and he suggested to leave it alone (I did read a few articles which seem to back this up). This is when it was also felt that it would be reasonable for mom to see a surgeon although her doctor was fairly certian she was nonresectable. Her second return to hospital and subsequent bypass and ERCP moved her to palliative status due to the spread of the disease. My mom was also clear that she did not feel she could live through a major surgery and wanted to really focus on quality of life for how ever long she has.

When I spoke to her doctor in August about her prognosis, he was hesitant to answer. When pushed, he felt that if she tolerates her stent well she could have a good year or so. However, he added that she could get an infection and that could be it.

Thanks again for your welcome. This site, particularly the discussion board, has provided us with more information than we can find anywhere else. We know each patient and their experience is unique, but it helps to understand what others have gone through, are going through, and to have a place to ask questions and have community of understanding of what we are going through.