Xifaxin working

Wanted to thank everyone who has encourated me through the crazy days.  I'm now taking Xifaxin along with the lactulose and it's helping.  Things have stalled with being evaluated for transplant.  I had four seizures last month (they originally thought it was mini stroke).  We're still finding out more about that and trying to get the right medication and the right doses.

So, none of the tests they were going to do at the pre-transplant clinic have been done yet.  It's a bit frustrating because we keep having these clinic meetings (5 hours of driving) but nothing moves ahead.  It's been 8 weeks since the hepatologist told me she wanted to do a contrast enhanced ultrasounds for liver cancer (a spot on the ultrasound) and possible clot on the portal vein, but that hasn't been done, either, even though it was on an urgent basis.  A bit unsettling.

I find if I have a busy day, I must rest the next.  Am extremely clumsy but learning ways to get around it.  It's amazing how slow you can go if you have to!  LOL  Am thinking of getting a cane.

Not driving and not missing it - I know I'm incompetent in that department.

I have the scariest new symptom ... short term memory loss.  Don't know whether it's from the HE or seizures but the only way I have to deal with it is just let go.  If I try too hard to remember I panic and that's not a good thing.  So I just have to let it go (not my strong suit - I'm pretty stubborn). 

Am realizing that the greatest battle is ahead but am determined to buck up ... the lactulose and xifaxin help.  So thanks to this forum I knew about it and was able to ask about it and GET IT.

Am always grateful for you all ... on the 18th we have another clinic meeting.  Perhaps it will go better.  I'm taking advantage of this lovely day where I am clear enough to say Merry Christmas to all.

 

Debbie, I'm very sorry about the seizures preventing you from going ahead with your evaluation. It's important that they find a way to control them. I have to tell you that you're not the Lone Ranger. My short-term memory has gotten really bad. Like you, I just have to let it go. Sometimes it will come to me 10 min. later and others I just can't remember. I'm currently missing the Xmas gift I got for my sister. It's around here somewhere. When I was planning to do some online shopping, I couldn't find the credit card I planned to use. So I had to use another with a higher interest rate. A few hours later, I found the one I'd been looking for--in my change pouch I use for laundry. There is no earthly reason why I put it in there.

I never was Speedy Gonzalez, but since transplant I've slowed to a turtle's pace. I'm way behind in Christmas preparations, so I have to focus on that and let other stuff go. Also, if I go to Mayo or shopping one day, I'm too wiped out to do anything the next day.

Is it mandatory for you to be at every meeting? Couldn't you get the info about it by phone from your Pre-Transplant Coordinator? I'm relieved to know you are not driving.

It's great to know that the Xifaxan is helping you. Thank you for letting us know.

For diagnosis of liver cancer, it's best to have an MRI with Gadolinium. I've been diagnosed with liver cancer twice with this, and it's what Mayo uses at least every 6 mos. to make sure there's no more cancer. Sometimes they will also MRI my chest and head with that contrast. I've been told that cancer "lights up like a Christmas tree" in cancerous areas.

Hang in there and keep us informed of what is going on.

P.S. Rick, a wet brain is often found in life-long drinkers like my mother in the very last stages of liver disease, though she somehow managed to live to 81. The brain cells are mostly dead--the ones that deal with memory, especially. She didn't remember the names of family members or where they were or if they were dead. about 18 yrs. prior to her death, she didn't recognize my sister (I had cut off communication with my mother.) The doctor called her "a poor historian" in her medical records that I obtained after her death. Wet brain is very much like senility, but it's caused by alcohol abuse.

Hugs,
Connie

David - yes I'm taking a low dose of tegretol - dilantin was too strong for me. So that makes me feel a bit more safe (I so know what you mean there). That's what they want to get stabilized. They're pretty sure the stroke/seizures aren't related but then they changed their minds a bit lately, so I guess we'll eventually know.

A. Ziffle - I hope it's just a nodule (didn't know there was such a thing). Hope so.

Connie - I'm going to write down the name of that MRI test for our appointment on the 18th. You made me laugh "I have to tell you that you're not the Lone Ranger. My short-term memory has gotten really bad. Like you, I just have to let it go. Sometimes it will come to me 10 min. later and others I just can't remember. I'm currently missing the Xmas gift I got for my sister. It's around here somewhere. When I was planning to do some online shopping, I couldn't find the credit card I planned to use. So I had to use another with a higher interest rate. A few hours later, I found the one I'd been looking for--in my change pouch I use for laundry. There is no earthly reason why I put it in there." Oh my, it sounds like one of my days ... and I WAS feeling like the Lone Ranger. Lots of folks laugh with me about it. I guess laugh is all we can do. Glad you found your credit card, though.

I'm going to be more patient, get through the holidays and just try to enjoy all the folks we'll see. My husband must be loving this ... I'm very docile and let him have his own way most the time now. LOL I do think come the New Year that I will get him to take over our banking. Cooking will always be my domain but I figured out quite some time ago how to make that easy. I cook in bulk on good days and freeze it. He's awesome, too, he doesn't mind the same thing over and over. Good thing.

Thanks, everyone.