Liver pre-transplant question

Posted by jodeej @jodeej, Mar 26, 2018

My husband has occasional issues with stomach upset resulting in diarrhea recently. Is this part of his liver issue or is it possibly something else? He went to to work today, but turned around and came right back home because of it. We do go back for his 3 month check-up the week of the 9th, so I can talk to the transplant team about it. I know his liver is really getting worse because his breath is starting to smell and his "brain fog" or cognition is getting worse.
Thanks,
JoDee

@jodeej

@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

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Hepatic encephalopathy – an over accumulation of amonia in the bloodstream and brain. Causes fogginess or short term amnesia and difficulties with balance (gait) and fine motor issues, and mood changes.

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@jodeej

@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

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Hepatic encephalopathy- problems with gross and fine motor function, mood, and fogginess of the mind.

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@jodeej

@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

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@gaylea1 I can't believe that you haven't head a transplant at a 37! It's Hepatic encephalopathy. When I look back I can see my husband has had some mild episodes. I'm sure they will get worse before he transplants. It doesn't help that he is a bit on the moody side to begin with, I'm sure. 😉

@jodeej

@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

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Thank you. I don't have a build up of ammonia now due to drinking lots of water, diet and meds.

@jodeej

@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

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@jodeej I hope all goes well in Rochester. With xifaxan, and then with added lactulose eventually, my symptoms were kept at bay. Hopefully he will be using one or both of these and do well with them. As his liver gets worse of course the symptoms increase.
Will be thinking of you.
JK

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@jodeej

@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

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@gaylea1 Along with the other symptoms of HE mentioned, there are four stages of HE. When it is really bad and not attended to, it can lead to coma For me, the main thing was total confusion. I landed in the hospital 3 or 4 times, due to the confusion. My husband could not handle me at all and actually called an ambulance a couple of times. I hate to admit it, but I did also get somewhat aggressive and belligerent. When I think of those episodes it brings tears to my eyes. I was a totally different person. Oddly, in between episodes I was perfectly and led a totally normal life. Some people are in a fog most of the time.
JK

@jodeej

@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

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@jodeej I am stunned that at that MELD he has not been transplanted, and also that he has not experienced more severe HE episodes. He is one of the very fortunate ones to be functioning so well with such a high MELD.
JK

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@jodeej I thought you said somewhere that his MELD was 36. I am not surprised that if it's 30 he has not yet been transplanted, particularly if he happens to be type O. I understand that type can take longer, probably because they can transplant those livers to anyone waiting, whereas type A. B, AB can only go to the same types.
JK

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@gaylea1

I have a question for people who take lactulose and rifaximin. They have suspended my driving licence because of these two drugs. I don't suffer from confusion or dizziness. Has anyone else had a problem of their licence being taken away? This is in Ontario.

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@gayleaf1 I did not have a problem, but I know that varies in this country by the state you are in. I don't think it's being on those drugs, it's simply that you have had HE episodes. Some people have them come on quickly and you would not want to be driving if that happened. Thankfully, mine generally had a forewarning — a sick feeling stomach, fatigue — unless I woke up with one, which did happen just a few times. It sounds as if you could be driving still, but if you do and have an accident, I believe your insurance would not cover it.
JK

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@jodeej

@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

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@jodeej Oh my goodness I can't believe I typed 37. Should be 27. So very sorry for my mistake.

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@jodeej

@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

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I was in that terrible confused stage when I was first diagnosed. My husband couldn't convince me to go to the hospital so my daughter came and I went by ambulance. I lost a full 3 weeks not remembering the time of year, birthdays, where I lived and all my phone numbers and pin codes. It was horrific. I didn't even know what time of the day it was. Slowly I regained my "sanity" but it took 6 months to regain my functioning self. I don't remember anything that happened for those initial 3 months. I still dony know what happened.

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@jodeej

@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

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@contentandwell thank you. I'll keep all of you updated.
JoDee

@contentandwell

@jodeej I thought you said somewhere that his MELD was 36. I am not surprised that if it's 30 he has not yet been transplanted, particularly if he happens to be type O. I understand that type can take longer, probably because they can transplant those livers to anyone waiting, whereas type A. B, AB can only go to the same types.
JK

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@contentandwell if I did post 36 it was a typo. He went to 30 on May 3rd. He gets some automatic bumps due to his liver cancer. It's supposed to go to 32 on August 3rd. Fingers crossed that he transplants soon.

@rosemarya

@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

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@rosemary That's exactly why I post everything chronologigically as I journey through the donor side of transplants even when it seems a bit akward.

@jodeej

@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

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@gaylea1 There is no need for apologies when seeking facts & truth. That is one of the reasons we participate on the Mayo Connect forum. To share our experiences/ knowledge without fear of judgement.

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