1. < Transplants

Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

Interested in more discussions like this? Go to the Transplants Support Group.

godlygal | @godlygal | Jan 6, 2019
In reply to @gaylea1 "@godlygal ...I can not stress enough that your partner address his alcohol consumption. Believe me, I..." + (show)
@gaylea1

@godlygal ...I can not stress enough that your partner address his alcohol consumption. Believe me, I know how hard it is to talk sense to a drinker. This is no easy task. You will need help with this. He will not be considered for a transplant without being at least 6 months alcohol free. I think stressing life without alcohol over death is a much happier scenario. Please, please try to enlist help.

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He does not want to stop drinking and say s he doesn’t care if he dies

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gaylea1 | @gaylea1 | Jan 6, 2019
In reply to @rosemarya "Dear godlygal @godlygal, Welcome to Connect. As I read your post, I can see that you..." + (show)
@rosemarya

Dear godlygal @godlygal, Welcome to Connect. As I read your post, I can see that you care very deeply for your friend. The cirrhosis and symptoms that you describe are miserable for him as wall as for you. And with the complicating factor of mom's diagnosis, it is little wonder that you feel frightened and stressed.
Who is treating your friend for the cirrhosis? What kind of advice, counseling, or help with alcohol addiction is being offered? You must bring up these concerns to the provider because your friend has to assume his share of the responsibility for his situation. And you should not be expected know the answers.

Right now, I am concerned about you, as his caregiver. Caregivers of all ages fall into the caregiving role for all sorts of reasons. And from what I have read, none of them is ever prepared. I want to invite you to the Caregiver Discussion Group. This is a discussion group where you can read about other people who have been faced with situations where they, too, asked, "How do I handle this?" I know that if you post your question there, you will find that you are not alone.
Meet fellow Caregivers - Introduce yourself
https://connect.mayoclinic.org/discussion/meet-fellow-caregivers-introduce-yourself/

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@godlygal ...I can not stress enough that your partner address his alcohol consumption. Believe me, I know how hard it is to talk sense to a drinker. This is no easy task. You will need help with this. He will not be considered for a transplant without being at least 6 months alcohol free. I think stressing life without alcohol over death is a much happier scenario. Please, please try to enlist help.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 6, 2019
In reply to @shelly63 "Hi I’m a 37 female suffering from budd chari that caused me to get stage four..." + (show)
@shelly63

Hi I’m a 37 female suffering from budd chari that caused me to get stage four cirrhosis of the liver... I’m so scared and I’m out off work and can’t work I don’t know what to do anymore...

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Welcome to Connect @shelly63.
I'd like to direct you to this discussion with other members talking specifically about cirrhosis of the liver:
- NASH and cirrhosis of the liver https://connect.mayoclinic.org/discussion/nash-and-cirrhosis-of-the-liver/

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shelly63 | @shelly63 | Jan 6, 2019

Hi I’m a 37 female suffering from budd chari that caused me to get stage four cirrhosis of the liver... I’m so scared and I’m out off work and can’t work I don’t know what to do anymore...

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2 replies
JK | @contentandwell | Jan 6, 2019
In reply to @godlygal "Hello my name is Jeannie and I have a loved one with cirrhosis hepatic encephalopathy and..." + (show)
@godlygal

Hello my name is Jeannie and I have a loved one with cirrhosis hepatic encephalopathy and pancreatitis and is a raging alcoholic I am his gf and caregiver I don’t know how to handle this as it’s getting progressively worse everyday he has fits of rage and gets violent and I need to know how to help him he can’t handle one little speck of stress and he just found out his mom has stage four cancer so he’s a mess . I’m at my wits end and if he doesn’t want to do something he will not do it any suggestions oh and all I have is lacrulose he drinks it when he wants he’s somewhat suicidial and it scares me

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@godlygal Hi Jeannie. I can certainly understand your fears. Rosemary has given some great advice. Is your friend a patient of a hepatologist? If not his PCP should refer him to one. There are medications that can help with hepatic encephalopathy (HE). I had cirrhosis from fatty liver, and had HE episodes too. Initially I was on lactulose but then my hepatologist prescribed xifaxan with no lactulose. I was on xifaxan for quite a while and when my HE episodes resumed it was presumed it was because my cirrhosis had progressed so then I had to take both lactulose and xifaxan. Xifaxan works considerably better than lactulose, or at least it did for me.
You say he is an alcoholic. Is he trying to stop his alcohol abuse? If he does not he cannot be a candidate for a transplant, which of course is generally the best treatment for cirrhosis, although I do know of people who followed strict diets, no alcohol of course, and were apparently able to reverse their cirrhosis somewhat or at least hold it at bay.
I too am concerned about you. It is difficult to be a caregiver even with a patient who is generally cooperative, but when the patient is not, and is acting hostile, it must be virtually impossible. I hope you can get some good advice from the caregivers link that Rosemary sent you. Is there anyone else, someone in his family, who can also help and give you a break? That would at least give you a little break.
JK

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 6, 2019
In reply to @godlygal "Hello my name is Jeannie and I have a loved one with cirrhosis hepatic encephalopathy and..." + (show)
@godlygal

Hello my name is Jeannie and I have a loved one with cirrhosis hepatic encephalopathy and pancreatitis and is a raging alcoholic I am his gf and caregiver I don’t know how to handle this as it’s getting progressively worse everyday he has fits of rage and gets violent and I need to know how to help him he can’t handle one little speck of stress and he just found out his mom has stage four cancer so he’s a mess . I’m at my wits end and if he doesn’t want to do something he will not do it any suggestions oh and all I have is lacrulose he drinks it when he wants he’s somewhat suicidial and it scares me

Jump to this post

Dear godlygal @godlygal, Welcome to Connect. As I read your post, I can see that you care very deeply for your friend. The cirrhosis and symptoms that you describe are miserable for him as wall as for you. And with the complicating factor of mom's diagnosis, it is little wonder that you feel frightened and stressed.
Who is treating your friend for the cirrhosis? What kind of advice, counseling, or help with alcohol addiction is being offered? You must bring up these concerns to the provider because your friend has to assume his share of the responsibility for his situation. And you should not be expected know the answers.

Right now, I am concerned about you, as his caregiver. Caregivers of all ages fall into the caregiving role for all sorts of reasons. And from what I have read, none of them is ever prepared. I want to invite you to the Caregiver Discussion Group. This is a discussion group where you can read about other people who have been faced with situations where they, too, asked, "How do I handle this?" I know that if you post your question there, you will find that you are not alone.
Meet fellow Caregivers - Introduce yourself
https://connect.mayoclinic.org/discussion/meet-fellow-caregivers-introduce-yourself/

REPLY
1 reply
godlygal | @godlygal | Jan 6, 2019

Hello my name is Jeannie and I have a loved one with cirrhosis hepatic encephalopathy and pancreatitis and is a raging alcoholic I am his gf and caregiver I don’t know how to handle this as it’s getting progressively worse everyday he has fits of rage and gets violent and I need to know how to help him he can’t handle one little speck of stress and he just found out his mom has stage four cancer so he’s a mess . I’m at my wits end and if he doesn’t want to do something he will not do it any suggestions oh and all I have is lacrulose he drinks it when he wants he’s somewhat suicidial and it scares me

REPLY
4 replies
gaylea1 | @gaylea1 | Jan 5, 2019
In reply to @techi "@rosemarya Happy New Year Rosemary. I know you haven't heard from me in awhile. I have..." + (show)
@techi

@rosemarya Happy New Year Rosemary. I know you haven't heard from me in awhile. I have so many new doctors it crazy. Since l last talked to you l had my appendix removed and l was in the hospital twice. I just came out on the 27th. Missed Christmas with the family but l can't complain l still alive. I was on the xifaxan again because Dr Poterucha told me to get back on it. I did and when l called in for a refill l was having symptoms because l was waiting for the refill and the doctor rushed and put me in the psych ward. So now l am back on my medication. I been to a new neurologist and l really don't think he saw anything wrong with me. He never ordered any test and l didn't get a return visit. Then l was sent to the hospital l don't know how many days after it just a blur now. So l have an appointment with the doctor from the psych ward. He a neurologist/ psychiatrist and then my family practitioner, eye doctor and then next month the liver doctor. Which l am so unsettled about seeing him since he told me everything was ok when he had me admitted. He told me my ammonia levels were fine but then later l had my levels checked and it was high. So l am just praying. But now since l am back on my xifaxan and l have gotten off some meds l am fine. I hope you had a wonderful holiday because since l been out the hospital my grandson turned 1. Znd l had Christmas /New Year together. And l had my adopted grandchildren around me this weekend. I just came back from the movies with one of them today. So that's what it's all about spending time with those that love you and you loving them.

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@techi Lisa, you may want to ask your Liver doctor or hepatoligist (sp?) about adding lactulose to the xifaxin in order to aid the elimination of toxins in your body. This combination worked well for me. I am sorry to hear that you were admitted to the psych ward for this. I alos was jn the hospital over Christmas but in reality it was the safest place for me with the complications I had. Be well.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 4, 2019
In reply to @techi "@rosemarya Happy New Year Rosemary. I know you haven't heard from me in awhile. I have..." + (show)
@techi

@rosemarya Happy New Year Rosemary. I know you haven't heard from me in awhile. I have so many new doctors it crazy. Since l last talked to you l had my appendix removed and l was in the hospital twice. I just came out on the 27th. Missed Christmas with the family but l can't complain l still alive. I was on the xifaxan again because Dr Poterucha told me to get back on it. I did and when l called in for a refill l was having symptoms because l was waiting for the refill and the doctor rushed and put me in the psych ward. So now l am back on my medication. I been to a new neurologist and l really don't think he saw anything wrong with me. He never ordered any test and l didn't get a return visit. Then l was sent to the hospital l don't know how many days after it just a blur now. So l have an appointment with the doctor from the psych ward. He a neurologist/ psychiatrist and then my family practitioner, eye doctor and then next month the liver doctor. Which l am so unsettled about seeing him since he told me everything was ok when he had me admitted. He told me my ammonia levels were fine but then later l had my levels checked and it was high. So l am just praying. But now since l am back on my xifaxan and l have gotten off some meds l am fine. I hope you had a wonderful holiday because since l been out the hospital my grandson turned 1. Znd l had Christmas /New Year together. And l had my adopted grandchildren around me this weekend. I just came back from the movies with one of them today. So that's what it's all about spending time with those that love you and you loving them.

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Lisa, I am happy that you thought of me! I received a surprise phone call from a girlfriend today, and now I get a message from you. I am ready to do a happy dance.
I am sorry to hear that you have spent so much time in and out of medical/hospital care. Nobody ever promised us a smooth ride, did they? I feel that your doctors are trying to get your system in order, and are referring you to get the necessary treatment to do that. I think that I might have an idea of why the liver doctor wants to see you again, and that is to check the ammonia levels after you have been back on the medicine. There must be some reason that they are going up and down, that is why it is important to take the meds as directed, and to keep the follow-ups.
I know that you enjoyed the time with grandchildren, and they must have been happy that you were back home again. I will be going to grandchild's birthday party tomorrow and I will enjoy watching the kids running about and having real kiddie fun!
I hope your health continues on the mend during 2019.
Are your new doctors nearby? Will you return to Rochester for the liver doctor? Let me know how you are doing.
Hugs.

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