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jodeej
@jodeej

Posts: 494
Joined: Jan 13, 2018

Liver pre-transplant question

Posted by @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

REPLY

@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 That is awsome for you to share the ups & downs because it shows a more accurate picture than just one side or the other

Liked by Donna N

@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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I too have questions "Is HE normally accompanied by grumpiness or some form of agitation & does it go away with the transplant?"

Liked by jodeej, beckyjohnson

@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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It is my understanding that O is the universal donor blood type & AB is the universal recipient blood type

@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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Post-transplant people in my support group report it goes away and a few are embarrassed by what they put their caregivers through.

@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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@jodeej I got those extra points too, and then had to have MRIs regularly. By some miracle I was transplanted at MELD 28. My MELD would have been bumped up a bit, shortly after that, which had always made me wonder if the transplant center has some discretion in whom gets the call. Is it every three months it can get increased?
JK

Liked by jodeej, jerrydrennan

@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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@beckyjohnson I didn’t realize that AB is a universal recipient, but it makes sense. I am type B.
JK

Liked by beckyjohnson

@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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@beckyjohnson HE absolutely goes away after you have a transplant. You then have a beautifully functioning liver, filtering out all of those toxins. It is truly a hallelujah moment.
Also, my HE was often accompanied by agitation, and belligerence.
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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This should have said “perfectly cognizant”.
JK

@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
I have a MELD of 33 and I have not even been staged.

@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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thats 31 on the MELD.

@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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@beckyjohnson @contentandwell my husband is A, which is very common.

@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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My husband was staged in march and is now at meld 33 with type O blood. He was activated in march also , right after staging surgery. Our phones have been on 24/7 waiting for the call. Needless to say, still waiting!

@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 Tim's got bumped 21 points 6 months after listed. Since then it's been 2 points every 3 months. It will go to 32 in August. From reading your other post, I'm guessing you got transplanted earlier due to your blood type. B isn't as common.
Blessings,
JoDee

Liked by jerrydrennan

@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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@jodeej I always figured my blood type played a part in it too, but my husband is somehow convinced it was because I was deteriorating, and also because he figures I was a good candidate and would be a success story, which I was. During my wait I lost weight to get my BMI below 30 (it’s about 26 now) and increased my exercise. I was really very healthy going into the transplant, except for the ravages that cirrhosis had dealt me in the last 6 weeks. I shudder to think of that time — water leaking out of my feet and legs, I was retaining so much fluid. I gained 35 pounds of fluid. I was incredibly well, except for occasional HE episodes, up until then so I guess overall I have to figure I was very fortunate.
JK

@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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@lisamb I am unfamiliar with “staging”, what is that? What region are you in? It sounds like it must be one of the ones where getting transplanted happens at a higher MELD due to demand. My region (1) is that way also, but somehow I got lucky.
JK

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