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.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 26, 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, 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.

REPLY
stella25 | @stella25 | Jan 26, 2019
In reply to @jodeej "@stella25 congratulations on his workup! It is so exciting yet scary. My husband had a liver..." + (show)
@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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1 reply
jodeej | @jodeej | Jan 27, 2019
In reply to @stella25 "@jodeej We welcome your blessings! Thank you for your encouraging words of kindness:-) I hope your..." + (show)
@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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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 27, 2019
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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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 27, 2019
In reply to @rosemarya "Stella, I think this is an exciting event for you son, and even a bit frightening..." + (show)
@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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jerrydrennan | @jerrydrennan | Jan 28, 2019

@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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1 reply
nanaking | @nanaking | Jan 28, 2019
In reply to @jerrydrennan "@rosemarya Hello, I want to say the efficiency of the hospital was unreal. How nice and..." + (show)
@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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nanaking | @nanaking | Jan 28, 2019

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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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 28, 2019
In reply to @nanaking "He was getting care at UK an I moved him up to OH They have him..." + (show)
@nanaking

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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Hi nanaking. I am sorry that you are facing uncertainty about what top do for your brother. I am a volunteer mentor, and also a transplant recipient.
You said that your brother has a referral through UK. Where did they refer him? That is where I would start. I think that you should follow up on that referral and get an appointment. I also think you should contact the insurance carrier and talk to someone about what kind of coverage he has, as well as how much he or the family will be responsible for. The center where he will be seen should be able to help you with this, too.
Is his defiance a normal behavior for him? Since he has moved away from UK, has had any follow-up by a doctor?

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