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!

@frankw54

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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Hi, Frankw54. I want to extend a virtual handshake and say, 'Welcome' to Mayo Connect. As a transplant recipient myself, I am thrilled to meet you! That is wonderful to hear that you are 1 year post transplant! I had to chuckle when you said you are wondering what to do with yourself. You must be feeling real good. And a wait of only 3 days is almost unheard of in my experience.

I would like to learn more about your experience. Where did you get your transplant? How did it happen that you had a 3 day wait?
What (if any) post transplant questions would you like to ask?

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@frankw54

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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@frankw54 That's amazing that you were on the list for such a short time. Were you late getting on the list and then your MELD increased dramatically? I was on it for about 16 months. I am happy for you that the wait was short and it's all history now. It really is a wonderful feeling to have it behind you.

I too had HE episodes but I was fortunate in that mine were distinct and somewhat predictable. Sometimes I woke up with one. When I was prescribed xifaxan I went almost a year with no episodes at all so I never had to stop driving. The summer before my transplant (the transplant occurred in September 2016) I told my husband that I did not feel comfortable driving long distances anymore. I was worried if I felt an HE episode coming on I would be far from home.

Since my transplant I have resumed a very normal life, doing more than I had been able to do for quite a while. I am older so I work hard at staying in shape, a very worthwhile pursuit for people of all ages. You ask what to do with yourself — that's a good start. Also, I did volunteer work for a while, and if you have the time there are even some part-time jobs out there. I am presuming you are retired since you are asking what to do with yourself.
The options are endless, depending on what you would enjoy. There are now no restrictions for you.
JK

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@contentandwell

@frankw54 That's amazing that you were on the list for such a short time. Were you late getting on the list and then your MELD increased dramatically? I was on it for about 16 months. I am happy for you that the wait was short and it's all history now. It really is a wonderful feeling to have it behind you.

I too had HE episodes but I was fortunate in that mine were distinct and somewhat predictable. Sometimes I woke up with one. When I was prescribed xifaxan I went almost a year with no episodes at all so I never had to stop driving. The summer before my transplant (the transplant occurred in September 2016) I told my husband that I did not feel comfortable driving long distances anymore. I was worried if I felt an HE episode coming on I would be far from home.

Since my transplant I have resumed a very normal life, doing more than I had been able to do for quite a while. I am older so I work hard at staying in shape, a very worthwhile pursuit for people of all ages. You ask what to do with yourself — that's a good start. Also, I did volunteer work for a while, and if you have the time there are even some part-time jobs out there. I am presuming you are retired since you are asking what to do with yourself.
The options are endless, depending on what you would enjoy. There are now no restrictions for you.
JK

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My son is scheduled for his transplant evaluation Feb. 6 & 7. It's lovely to hear positive stories post transplant!

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@stella25

My son is scheduled for his transplant evaluation Feb. 6 & 7. It's lovely to hear positive stories post transplant!

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Stella, I think this is an exciting event for you son, and even a bit frightening him and you as he learns about his future journey. I feel a special interest in him because of his diagnosis of PSC. Remember that I am here if there is anything you want to ask or totalk about.

Your son most likely knows this informatioin, but I want you to have access to it also. – Getting Listed for Transplant
https://connect.mayoclinic.org/page/transplant/newsfeed/getting-listed-for-transplant/

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@rosemarya

Stella, I think this is an exciting event for you son, and even a bit frightening him and you as he learns about his future journey. I feel a special interest in him because of his diagnosis of PSC. Remember that I am here if there is anything you want to ask or totalk about.

Your son most likely knows this informatioin, but I want you to have access to it also. – Getting Listed for Transplant
https://connect.mayoclinic.org/page/transplant/newsfeed/getting-listed-for-transplant/

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Hi Rosemary! I meant to tell you earlier my name is actually Mary. Stella is just the sign on name I used to set up my account. I can't tell you how much it means to me that you have taken a special interest in my son's case. You have already been a wealth of information to us and it's comforting to know you will be there as we move forward:-) We are excited for our evaluation. Me, I'm a bit terrified as well. Your support is truly a blessing we are extremely grateful for. Thank you to all for sharing your stories. I'm honored to be a part of this family:-) I will keep you posted every step of the way.

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@stella25 congratulations on his workup! It is so exciting yet scary. My husband had a liver transplant last July, exactly 1 year after his initial appointments. I remember that week well. It was exhausting, but so good to know they want to make sure he was healthy enough to handle the surgery.
Blessings on your journey,
JoDee

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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, I have't seen anything from you lately, so I want to drop in to say, "Hi". How is your loved one handling his cirrhosis diagnosis? I know that it is a fright and a shock to hear those words. Has there been any improvement or change in his condition?
How are you doing? Have you found any support for your own needs as a caregiver?
I am thinking about you.

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@jodeej

@stella25 congratulations on his workup! It is so exciting yet scary. My husband had a liver transplant last July, exactly 1 year after his initial appointments. I remember that week well. It was exhausting, but so good to know they want to make sure he was healthy enough to handle the surgery.
Blessings on your journey,
JoDee

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@jodeej We welcome your blessings! Thank you for your encouraging words of kindness:-) I hope your husband is doing well and finding peace & happiness with the wonderful gift of life he has been given. Prayers for continued good health!!

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@stella25

@jodeej We welcome your blessings! Thank you for your encouraging words of kindness:-) I hope your husband is doing well and finding peace & happiness with the wonderful gift of life he has been given. Prayers for continued good health!!

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@stella25 physically he is doing fantastic. Unfortunately, due to medication he had to take too get rid of hep c, chemo for the cancer and now his immunosuppressants, he has some memory lapses. We are currently working with a speech therapist that specializes in "chemo brain" to rebuild what's been lost.
JoDee

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In reply to @nanaking "@nanaking" + (show)

nanaking, I want to Welcome you to Mayo Connect, an online patient network where members can ask questions, get answers, and support each other with similar health experiences.
I don't see any message here, so I want to ask you what brought you to the transplant conversation – Are you a patient? caregiver, or a donor? How can I assist you?

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@rosemarya

Stella, I think this is an exciting event for you son, and even a bit frightening him and you as he learns about his future journey. I feel a special interest in him because of his diagnosis of PSC. Remember that I am here if there is anything you want to ask or totalk about.

Your son most likely knows this informatioin, but I want you to have access to it also. – Getting Listed for Transplant
https://connect.mayoclinic.org/page/transplant/newsfeed/getting-listed-for-transplant/

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@jerrydrennan, Do you remember when you went thru your evaluation? Was there anything that surprised you, or that you wished you would have known ahead of time?

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@rosemarya
Hello, I want to say the efficiency of the hospital was unreal. How nice and courteous every one are. The evolving of my appointments how the grew and adjusted. What was supposed to be 5 days grew to 11 days.

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@jerrydrennan

@rosemarya
Hello, I want to say the efficiency of the hospital was unreal. How nice and courteous every one are. The evolving of my appointments how the grew and adjusted. What was supposed to be 5 days grew to 11 days.

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My Brother

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He was getting care at UK an I moved him up to OH They have him on meds. But he is getting defiant with me. I don't know how to get him taken care of. We do have a referral through UK My name is Kimalene King. I should have said that first. He was on the transplant list an he told them he didn't have family. He thought we would have to pay. Can you please set me in the right direction.
Thank you for your help

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