Liver pre-transplant question

Hi JoDee. I am also on a liver transplant list. Does your husband take lactulose? I have been taking it for over a year and it can cause diarrhea and gas but it keeps your mind clear. I always have diarrhea but the toxins are being flushed out so there is no build up. I hope this helps somewhat. Gayle

@gaylea1 no he doesn't, but he has both. He's mentioned that diarrhea happens when he eats certain foods, but he is gassy all the time. He had his gall bladder out several years ago, so I wonder if it's a combo of that and his liver not working properly?

@jodeej, There are so many ways that liver failure can show its ugly personality. I transplanted 9 years ago, and while I don't remember all of the bothersome signs and details, I do recall that some came temporarily, and some continued to get worse. The only for sure thing that I am comfortable sharing is that once my doctor told me that we all can show different symptoms with liver disease, even with the same underlying liver condition.

I see that your husband has an appointment coming up pretty soon. I encourage you to call your liver nurse or department whenever there is a concern about his symptoms as they change, particularly if they are affecting day-to-day life. My team always encouraged me to call them between appointments. Liver disease does not follow a scheduled set of appointments. And it is always best to be safe rather than put something off that may or may not be serious.

I know how miserable your husband must be feeling. You are doing exactly what my husband did for me by taking care of him. Prayers for both of you.
Keep in touch,
Rosemary

@gaylea1, Thank you for your input. I do not remember if I was or was not on lactulose prior to transplant. So your experience is very much appreciated by this mentor!
I want to send you hugs and hope during your waiting time.
Rosemary

@rosemarya I've noticed all the different symptoms. It is crazy that there are so many! I do message the team if I have questions and I have called when I had a concern. So far hasn't mentioned any stomach issues today. I will call or message them if he says anything else.
Thank you, JoDee

I suffered months of vomiting and nausea all most daily. I was given domperidone to be taken 3 x daily 30 mins before each meal. It has greatly improved my digestive system. I also take ondanestron for nause it has greatly improved my digestive system. Maybe these might help your husband. Best to ask your transplant team if these would work for him..my MELD score is 27 and climbing. I hope to get my call soon. Been 8.5 months on wait list. Best of luck to you.

@gayleaf1 I somehow missed this post earlier. I was also given ondanestron when my MELD got high, but I think my nausea was mainly caused by the dreaded lactulose. The ondanestron totally knocked me out, for a long time. I would suddenly NEED to get to bed and it made me feel miserable too, so I only took it a couple of times.
MELD 27 -- you're getting up there. What area are you in? I hope you are in an area where that MELD will get you a transplant soon. Despite not being in an area (the northeast) where transplants are generally done under MELD 30 I fortunately had mine at 28. I was listed for about a year and 3 months, I think. I am not entirely sure of exactly when I got listed. So much is a blur to me now. I wish I had kept a journal of the whole experience but especially of when I was in the hospital for my transplant. I intended to but forgot to pack the book I had planned to use for that and my husband couldn't find it.
JK

I live in the Twin Cities and am coming up on being listed for a year. I was lucky enough to find and be accepted into a pre- and post transplant weekly support group at the University of Minnesota. Support is wonderful to have. In fact people in the group suggested I was experiencing symptoms of encephalopathy and should look into Lactulose. I’ve been lucky. My pharmacy gets the flavorless kind, so no bad taste. A positive for me is it doesn’t disrupt me. It helps me because I can easily get constipated with the diuretics I’m taking to prevent ascites. My last paracentesis was last June at Mayo - 14 litres!

@rosemarya @contentandwell @gayle1 @kltchrmn I am almost certain my husband had a HE episode last week. He was crabby, tired and said he'd had "fog" all day. The reason I'm somewhat uncertain is that his dad had passed away a couple weeks earlier and he realized that Father's Day was coming up. So it could possible be grief and depression causing it. After looking at the symptoms though, I know he has been having signs of HE for quite awhile. We leave for Rochester tomorrow morning, so we will see what the doctor says. His score is a 30 right now.
Blessings,
JoDee

Is he taking Xifaxan, too? I’ve had one episode of HE that required hospitalization it came on so quickly. Apparently I was very crabby and angry. I do notice signs of HE almost daily, but my meds are keeping me on track. Fog, like fog, comes and goes.