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

@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 think A, along with B, tends to get transplanted sooner than O does. I am thinking of you and your husband a lot, i feel like I know you now. I hope this happens soon for him. If I recall you said he was still working. That’s amazing. I had stopped before all of this happened and ended up glad about that because I felt like I would have been somewhat unreliable.
JK

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I have stomach and diarrhea issues at times, plus the sweet breath and extreme fatigue. I also don't work as I would be very unreliable because of some of these ongoing complications – going on for the last couple of years. Every case is different.

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@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 actually read that in my research. I will find the link if you want me to.

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@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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2 of my 3 children are AB which is the rarest. 30+ years ago they were referred to as ABOs & it was believed that the only way you could be an ABO is if there was an rh- up line which my maternal grandmother was.

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@amyintucson

I have stomach and diarrhea issues at times, plus the sweet breath and extreme fatigue. I also don't work as I would be very unreliable because of some of these ongoing complications – going on for the last couple of years. Every case is different.

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@amyintucson You sound a lot like me. My diarrhea and stomach problems were fine when I was able to not be on lactulose though.
You are right, we each seem to have differences in our conditions. I had a lot of symptoms that are typical of cirrhosis and I still do not understand, nor will I ever, why my PCP was not able to put it all together, some were so obvious — plunging platelet count, HE episodes, shaking hands, always cold, sleeping difficulty. I still go to him, I had planned to change this year, but i know I will never trust him to give me a diagnosis with anything other than a very common ailment.
JK

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@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 Read that As and Bs get transplanted sooner? I have read that many places. What I never knew before though is that ABs are a universal recipient. Thanks though.
JK

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@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 RH negative is related to type O? I never knew that.
JK

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@amyintucson

I have stomach and diarrhea issues at times, plus the sweet breath and extreme fatigue. I also don't work as I would be very unreliable because of some of these ongoing complications – going on for the last couple of years. Every case is different.

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My PCP is great, but he works for a large health care provider which really limits what they can do in the office – everything seems to get referred. I was going to begin looking for a new doc, but then my GI doc joined the same practice in the same office! Love her, so I guess I'm staying. I was in living in NJ when my sarcoidosis was first diagnosed and my primary was so supportive.

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@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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We are in region 7. My husband has cholangiocarcinoma /bile duct cancer. Staging surgery is done to explore the abdomen area to make Sure cancer has not spread outside of the bile ducts. Staging is done close to transplant time . It is of course hard to judge for the transplant team when the exact date will be. We assumed when he had it done March 23rd it would be within a month. We are now at 3 months and are praying there has been no spread of the cancer.

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@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 It is related to AB but I'm not sure about O. My maternal grandmother was an rh-. I was told when I had 2 ABO (is what it was called in the 1980s) children that there has to be an rh- family member upline (parent/ grandparent/ great grandparent) in order to have an AB (as it's called today) child.

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I went through PCPs like the jones's go through cars. It is a great relief to have a physician, practice & practice network that I can rely on to maneuver through my insurance policy limitation & with whom there is mutual repoir & respect.

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@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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@jerrydrennan If someone answered this before, I am sorry for repeating the question, but I didn't see a response. I do not remember the term "staged", what is that? Does it refer to the multitude of tests you must have before being accepted as a transplant candidate?
JK

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@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 The wait is hard, for sure, and must be very hard with his MELD at 33. What region is he listed in, and do you know what the typical MELD is in that region for having a transplant?
JK

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@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
staging for liver and Bile duct cancer is when the do a lapo procedure and check to see if the cancer has spread. they will take biopsy. Negative means your good and the cancer has not spread. you will get activated for transplant. Positive means the cancer has spread to other areas and organs. You will be removed from the transplant list. I hope to be staged this July but I have been passed over twice already. I really would want to know what road I am taking.

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@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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Happy news! After being on transplant list for a liver since Feb 2017 and being activated March 23, 2018, a match was made this past thursday and transplant took place early June 22 at Mayo Rochester. My husband is doing great!!

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