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 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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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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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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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
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.

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jodeej | @jodeej | Jan 26, 2019

@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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1 reply
stella25 | @stella25 | Jan 25, 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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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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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 25, 2019
In reply to @stella25 "My son is scheduled for his transplant evaluation Feb. 6 & 7. It's lovely to hear..." + (show)
@stella25

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

Jump to this post

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/

REPLY
2 replies
stella25 | @stella25 | Jan 25, 2019
In reply to @contentandwell "@frankw54 That's amazing that you were on the list for such a short time. Were you..." + (show)
@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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