Liver transplant support group

Posted by lmctif @lmctif, Oct 29, 2018

Hello everyone! I am a transplant social worker in Florida. I am currently gathering information to put together a “Liver” support group. I was curious as to what specific topics people would be most interested in learning new information about / discussing! It is supposed to be more of an interactive class in which group members lead the discussion, but I would be interested to see what kinds of topics or discussions would be most beneficial from an outsiders perspective! Thanks in advance for any suggestions!

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

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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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

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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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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@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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@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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@gaylea1…….Your advice to @godlygal is spot on.

Liked by jerrydrennan

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@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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@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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Hi @godlygal
I want to add my welcome. It can't be easy trying to help someone who doesn't want to be helped. Like others have mentioned, be sure to be aware of your own safety. I would like you to know about the National Domestic Violence Hotline website http://www.thehotline.org/ On this website you will find a phone number to call 1-800-799-7233 or you can use the online chat and get help without saying a word.
By calling the Hotline, you can work with professionals to find safety and solution that is right for you. And even just to create a plan.

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@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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@shelly63 Are you going to a major medical center? I googled Budd-Chiari, I had never heard of it before, and I see that it is quite rare so you should be going to one, preferably one that does do liver transplants in case that turns out to be the best option. I think you need to do that and proceed from there.
I have no advice beyond that, but please be reassured knowing that there are options for you. I would presume that the first step would be seeing a hepatologist at a transplant center. That's where I started when I was diagnosed with cirrhosis.
I hope you will maintain contact, I will be interested in hearing how you make out.
JK

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@contentandwell

@shelly63 Are you going to a major medical center? I googled Budd-Chiari, I had never heard of it before, and I see that it is quite rare so you should be going to one, preferably one that does do liver transplants in case that turns out to be the best option. I think you need to do that and proceed from there.
I have no advice beyond that, but please be reassured knowing that there are options for you. I would presume that the first step would be seeing a hepatologist at a transplant center. That's where I started when I was diagnosed with cirrhosis.
I hope you will maintain contact, I will be interested in hearing how you make out.
JK

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I go to the Mayo Clinic to get the help I need .. hopefully in the end of my evaluation for the transplant @jk

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@shelly63

I go to the Mayo Clinic to get the help I need .. hopefully in the end of my evaluation for the transplant @jk

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@shelly63 That's great, Mayo of course is one of the best so I am sure they will do well by you.
JK

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@shelly63

I go to the Mayo Clinic to get the help I need .. hopefully in the end of my evaluation for the transplant @jk

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Hi, shelly63. I received my liver and a kidney (same time) at Mayo Clinic in Rochester. I can understand your fear because that is exactly what I felt during my pretransplant journey. One of my biggest fears before I was transferred to Mayo, was feeling like I was the only person with my condition, PSC (Primary Sclerosing Cholangitis) , another of those rare conditions. If there is anything that you want to ask me, I am here and I will share from my experience.

If you go to the NASH and cirrhosis of the liver that Colleen shared, you will meet others who are also frightened.- https://connect.mayoclinic.org/discussion/nash-and-cirrhosis-of-the-liver/

One thing that I have learned along the way, is that regardless of the named disease, we all experience the same fears, we share many symptoms, and we all go through the same evaluation testing. The team at Mayo is going to do all that it can to make you comfortable thru the entire process.
Which Mayo Campus is treating you?

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@gaylea1

@lmctif as a pre-transplant liver patient I am interested in symptoms that occur before surgery and tips on how to remedy them. Sharing in others journeys seems to be very helpful and combats the lonliness. Just knowing that others are waiting and discussing post transplant expectations are beneficial.

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The major issue that I experienced was having high ammonia levels. I had to stop driving because the levels made me feel and appear intoxicated.

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@parmcat

Hi there,

I just stumbled on this thread. I am almost 1 year post liver transplant (Dec 7). I am in London, Ontario, Canada. Since I have had a profound change in my life, I feel the need to give back. There are NO in person live support groups anywhere in my area. My wife and I have decided to develope a group to offer to the people affected by this illness.

We are going to run it monthly, at the hospital on clinic days, so people can wander in casually when they are already at the hospital. Initially, it will be an open group with no set structure and will be consumer driven.

I am curious to hear what your group looks like and how it is being received

Feel free to contact me anytime

All the best

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I also am one year post liver transplant. I know exactly where you are coming from. I was on the list only three days! Now I am wondering just what I should do with myself. This is why I joined this group. To find out what others think.

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