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!

@banzai

I was treated for diabetes but didn’t have it
It was liver failure

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@banzai what type of liver failure do you have? Mine was from cirrhosis.
You mention alternative medications. What are they, and has your gastroenterologist or hepatologist prescribed them?
I can understand being leery of regular medications, but many alternative medications have negatives also. There is now much they can do to help with liver problems.
I will be curious to hear how the alternative medications are working for you, I hope they will be effective.
JK

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I am constantly amazed at the level of support and compassion that all of our members are share so generously. And with that in mind, I want to drop in on some recently acitve members who came here for support for updates.

@nanaking, I am thinking about you and your brother on this rainy Kentucky morning. Were you able to schedule an appointment at UC? Will he need to be re-evaluated for the Ohio transplant list?

@frankw54, How are you getting along as you begin your 2nd year with your new liver? The last time we talked, you were wondering what to do with your time. What kind of ideas have you come up with? (I know that @contentandwell would welcome your experience in the HE discussions)

@godlygal, I hope that you have found a sense of peace and direction with your caregiver role for your friend. How are you getting along? What kind of support are you getting? How can I help you?

@shelly63, I was not familiar with Budd-chiari, so I googled it. https://rarediseases.org/rare-diseases/budd-chiari-syndrome/
I also had a rare liver disease (PSC). I am thinking about you. How did your appointment go?

Members old and new – Add your updates, too.

Liked by jodeej, stella25

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@rosemarya: Do you have any info about Psoriactic Cirrohsis, non-alcohol related? Someone close has been diagnosed & given a pretty dire prognosis. Family Would like him to get a second opinion and/go to Mayo? What are treatments, long term consequences, successful outcomes, etc

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@suecreader

@rosemarya: Do you have any info about Psoriactic Cirrohsis, non-alcohol related? Someone close has been diagnosed & given a pretty dire prognosis. Family Would like him to get a second opinion and/go to Mayo? What are treatments, long term consequences, successful outcomes, etc

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I was treated for diabetes for five years then got civil doc diagnosed me as end stage cirrhosis liver. Va pursed around last year n I got Medicare n tricare for life but all say too late or not bad enough for transplant now.
I’m shutting down my stomach n all keep me in pain. All I get is pills. Western Med way. Going use eastern remedies.
Get second opinion yes and best facilities. Time is urgent. Sorry. If I sleep couple hours night or eat I’m ok. For a bit but too weak. Jim

REPLY
@rosemarya

I am constantly amazed at the level of support and compassion that all of our members are share so generously. And with that in mind, I want to drop in on some recently acitve members who came here for support for updates.

@nanaking, I am thinking about you and your brother on this rainy Kentucky morning. Were you able to schedule an appointment at UC? Will he need to be re-evaluated for the Ohio transplant list?

@frankw54, How are you getting along as you begin your 2nd year with your new liver? The last time we talked, you were wondering what to do with your time. What kind of ideas have you come up with? (I know that @contentandwell would welcome your experience in the HE discussions)

@godlygal, I hope that you have found a sense of peace and direction with your caregiver role for your friend. How are you getting along? What kind of support are you getting? How can I help you?

@shelly63, I was not familiar with Budd-chiari, so I googled it. https://rarediseases.org/rare-diseases/budd-chiari-syndrome/
I also had a rare liver disease (PSC). I am thinking about you. How did your appointment go?

Members old and new – Add your updates, too.

Jump to this post

@rosemarya I'll give you our Tim update. He has been doing speech for his chemo brain for about a month now. I have seen improvement! (Some days are definitely better than others.) My goal is for him to be doing well enough that I'll feel comfortable leaving him for a few days so I can help our daughter after our grandchild arrives the end of March!
Blessings,
JoDee

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@jodeej

@rosemarya I'll give you our Tim update. He has been doing speech for his chemo brain for about a month now. I have seen improvement! (Some days are definitely better than others.) My goal is for him to be doing well enough that I'll feel comfortable leaving him for a few days so I can help our daughter after our grandchild arrives the end of March!
Blessings,
JoDee

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Good progress for Tim and a great goal to achieve…

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@rosemarya

I am constantly amazed at the level of support and compassion that all of our members are share so generously. And with that in mind, I want to drop in on some recently acitve members who came here for support for updates.

@nanaking, I am thinking about you and your brother on this rainy Kentucky morning. Were you able to schedule an appointment at UC? Will he need to be re-evaluated for the Ohio transplant list?

@frankw54, How are you getting along as you begin your 2nd year with your new liver? The last time we talked, you were wondering what to do with your time. What kind of ideas have you come up with? (I know that @contentandwell would welcome your experience in the HE discussions)

@godlygal, I hope that you have found a sense of peace and direction with your caregiver role for your friend. How are you getting along? What kind of support are you getting? How can I help you?

@shelly63, I was not familiar with Budd-chiari, so I googled it. https://rarediseases.org/rare-diseases/budd-chiari-syndrome/
I also had a rare liver disease (PSC). I am thinking about you. How did your appointment go?

Members old and new – Add your updates, too.

Jump to this post

@frankw54 @rosemarya Of course, Frank is also blessedly beyond this, but I am happy to answer any questions that anyone may have about HE episodes. For me, it was the most horrible part of cirrhosis, other than when I was having one I was entirely lucid and cognizant, but when I had those episodes it was beyond horrible.
JK

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@jodeej

@rosemarya I'll give you our Tim update. He has been doing speech for his chemo brain for about a month now. I have seen improvement! (Some days are definitely better than others.) My goal is for him to be doing well enough that I'll feel comfortable leaving him for a few days so I can help our daughter after our grandchild arrives the end of March!
Blessings,
JoDee

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@jodeej I am so relieved to hear that Tim is improving. I was going to PM you if I hadn't heard in the next day or two. Praying that the improvements continue.
JK

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@suecreader

@rosemarya: Do you have any info about Psoriactic Cirrohsis, non-alcohol related? Someone close has been diagnosed & given a pretty dire prognosis. Family Would like him to get a second opinion and/go to Mayo? What are treatments, long term consequences, successful outcomes, etc

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Sue, I did not find any information about Psoriatic Cirrhosis. I did see some references that mention that autoimmune diseases like psoriatic arthritis can affect other organs, including liver. Also, there are many diseases that are non alcoholic. This could be a rare condition, or a combination of conditions. Either way, I want you to share this link to Mayo Liver Transplant Department with them. They can read about the Mayo Liver transplant Dept, and use the Contact information to speak to someone in the liver transplant dept about a second opinion.
Liver Transplant Program
https://www.mayoclinic.org/departments-centers/liver-transplant/home/orc-20211818
I am a patient, and from my own experience, every liver patient has a journey that is as unique as that individual. I do not know, nor am I qualified to answer your questions about specific treatment, consequences, outcomes. Those questions should be addressed only by your friends liver specialist. I am willing, and available to provide any support, resources, and information from my own experiences that could be helpful. I received my own combined liver and kidney transplant at Mayo in 2009.

Let me know how I, or any of our members can be of support. We are always eager to talk with fellow patients on our health journeys.
@suecreader, Will you send an update? Or better, yet, Invite your friend to join the conversation here on Mayo Connect.

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@banzai

I was treated for diabetes for five years then got civil doc diagnosed me as end stage cirrhosis liver. Va pursed around last year n I got Medicare n tricare for life but all say too late or not bad enough for transplant now.
I’m shutting down my stomach n all keep me in pain. All I get is pills. Western Med way. Going use eastern remedies.
Get second opinion yes and best facilities. Time is urgent. Sorry. If I sleep couple hours night or eat I’m ok. For a bit but too weak. Jim

Jump to this post

@banzai Jim. I am so sorry to hear about your situation. Medicine is so individualized, and everybody reacts to it differently. The unfortunate part, as you are experiencing is that medical science has not yet reached the point of satisfaction and healing.
Sleeping can be a difficulty with liver disease. I am guessing that you doze a lot during the day. What do you do to pass the time?
How can I support you during this difficult time?

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@rosemarya

Sue, I did not find any information about Psoriatic Cirrhosis. I did see some references that mention that autoimmune diseases like psoriatic arthritis can affect other organs, including liver. Also, there are many diseases that are non alcoholic. This could be a rare condition, or a combination of conditions. Either way, I want you to share this link to Mayo Liver Transplant Department with them. They can read about the Mayo Liver transplant Dept, and use the Contact information to speak to someone in the liver transplant dept about a second opinion.
Liver Transplant Program
https://www.mayoclinic.org/departments-centers/liver-transplant/home/orc-20211818
I am a patient, and from my own experience, every liver patient has a journey that is as unique as that individual. I do not know, nor am I qualified to answer your questions about specific treatment, consequences, outcomes. Those questions should be addressed only by your friends liver specialist. I am willing, and available to provide any support, resources, and information from my own experiences that could be helpful. I received my own combined liver and kidney transplant at Mayo in 2009.

Let me know how I, or any of our members can be of support. We are always eager to talk with fellow patients on our health journeys.
@suecreader, Will you send an update? Or better, yet, Invite your friend to join the conversation here on Mayo Connect.

Jump to this post

@suecreader @rosemarya I googled "Psoriatic Cirrhosis" (slightly different spelling) and did see a number of things that might be applicable. Sue, you could try that if you have not already. I found it interesting that psoriasis can be related to many other things, I never knew that. What I did know from having cirrhosis that our livers have an influence on so much within our bodies – it's amazing.
JK

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@rosemarya

@banzai Jim. I am so sorry to hear about your situation. Medicine is so individualized, and everybody reacts to it differently. The unfortunate part, as you are experiencing is that medical science has not yet reached the point of satisfaction and healing.
Sleeping can be a difficulty with liver disease. I am guessing that you doze a lot during the day. What do you do to pass the time?
How can I support you during this difficult time?

Jump to this post

I try doze but with lactulose n rixfamin n side effects n stomach I can’t rest. Trying alt Meds but docs use meds n side effects r diarrhea n eat n but all matter is trying get transplant. I was Military aircre b combat vet n learned fly after n dive etc. also writer n photography but now too I’ll n tired. If I do one thing day that’s it. I went from 205-135 in year. So I’m cold all time. I gotta get comforter n electric blanket. Thanks for caring. I’m n Facebook but opinionated ha.

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@banzai

I try doze but with lactulose n rixfamin n side effects n stomach I can’t rest. Trying alt Meds but docs use meds n side effects r diarrhea n eat n but all matter is trying get transplant. I was Military aircre b combat vet n learned fly after n dive etc. also writer n photography but now too I’ll n tired. If I do one thing day that’s it. I went from 205-135 in year. So I’m cold all time. I gotta get comforter n electric blanket. Thanks for caring. I’m n Facebook but opinionated ha.

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@banzai When I had cirrhosis, prior to my transplant, I too was cold and tired all of the time. I would wear flannel pajamas to bed with a fleece jacket on. Those are both symptoms of cirrhosis. Also, diabetes is pretty common with cirrhosis. I was diagnosed with diabetes long before I was diagnosed with cirrhosis. When I was finally was diagnosed with cirrhosis I was told by a hepatologist that I probably had it for about 10 years, it takes a while to announce itself. If you are not seeing a hepatologist you should try to.

Lactulose always upset my stomach too. Diluting it with some flavored soda water helped it to go down easier. I was on just xifaxan for a while and that had no bad effects for me. As my cirrhosis progressed I had to resume taking lactulose along with xifaxan. It's a necessary evil and the diarrhea is actually an intended effect to get the toxins out of your system to prevent hepatic encephalopathy episodes (HE). It is one of the very few drugs that the patient has to titrate themselves to achieve 3 – 4 soft bowel movements a day. If you are having more diarrhea than that ask your doctor — he or she will probably tell you to decrease the amount you are taking.
JK

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@rosemarya

Sue, I did not find any information about Psoriatic Cirrhosis. I did see some references that mention that autoimmune diseases like psoriatic arthritis can affect other organs, including liver. Also, there are many diseases that are non alcoholic. This could be a rare condition, or a combination of conditions. Either way, I want you to share this link to Mayo Liver Transplant Department with them. They can read about the Mayo Liver transplant Dept, and use the Contact information to speak to someone in the liver transplant dept about a second opinion.
Liver Transplant Program
https://www.mayoclinic.org/departments-centers/liver-transplant/home/orc-20211818
I am a patient, and from my own experience, every liver patient has a journey that is as unique as that individual. I do not know, nor am I qualified to answer your questions about specific treatment, consequences, outcomes. Those questions should be addressed only by your friends liver specialist. I am willing, and available to provide any support, resources, and information from my own experiences that could be helpful. I received my own combined liver and kidney transplant at Mayo in 2009.

Let me know how I, or any of our members can be of support. We are always eager to talk with fellow patients on our health journeys.
@suecreader, Will you send an update? Or better, yet, Invite your friend to join the conversation here on Mayo Connect.

Jump to this post

Thank you so much for your research and support @rosemarya. I very much appreciate this info. Turns out I had the term wrong since when I was encouraging and reiterating your message about joining the Connect group, I was informed that the condition was Psoriatic Arthritis, and it turns out that this is also affecting his liver. I guess by the time I got home, I was thinking cirrhosis due to the impact on the liver. Would I possibly find info about the Psoriatic Arthritis under Auto Immune Diseases? I am encouraging him to joint this group.

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Belly swollen. Hurt to tears. What to do

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