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 | Dec 30, 2018
In reply to @stella25 "Hello Rosemary. I'm fairly new to Connect. I want to thank you for being a mentor..." + (show)
@stella25

Hello Rosemary. I'm fairly new to Connect. I want to thank you for being a mentor for transplants. Your insight and willingness to share is extremely beneficial to those of us heading to transplant. I appreciate you providing the pages for Living Donor and Recipient Toolkits. Great information. Again, thank you for your time and expertise. I'm sure I will be coming to you quite often in the very near future.

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Stella, I just noticed that you are following the Connect PSC Pages. Does your son have PSC? That is why I needed a transplant. I was diagnosed with PSC and have received a successful transplant and I am doing well. I will honor 10 year anniversary in April.
If you want to talk PSC, I am here, anytime.

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1 reply
stella25 | @stella25 | Dec 30, 2018
In reply to @rosemarya "Stella, I just noticed that you are following the Connect PSC Pages. Does your son have..." + (show)
@rosemarya

Stella, I just noticed that you are following the Connect PSC Pages. Does your son have PSC? That is why I needed a transplant. I was diagnosed with PSC and have received a successful transplant and I am doing well. I will honor 10 year anniversary in April.
If you want to talk PSC, I am here, anytime.

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Thank you so much Rosemary. Yes, my son has PSC. He was diagnosed a year ago. Took close to two years to get a proper diagnosis. Based on what we now know about the disease we are guessing he probably has had it at least 6 years possibly longer. He's 34 now and is stage 4 cirrhosis. The past month or so has warranted a couple of trips to the ER. A week or so ago his doctor suggested he is getting close to meeting with the transplant evaluation team. It is wonderful to hear success transplant stories such as yours! 10 years!! Wow, simply amazing:-) I will definitely keep the conversation going with you. Thank you again. Your generous offer is greatly appreciated by myself & my family.

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2 replies
mnemeth318 | @mnemeth318 | Dec 30, 2018
In reply to @rosemarya "@mnemeth318, I want to drop in for a short visit and say that I hope that..." + (show)
@rosemarya

@mnemeth318, I want to drop in for a short visit and say that I hope that you are experiencing a satisfactory recovery. I hope that you will have the energy to welcome the New Year!
Have you been released from the hospital?

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Thanks @rosemarya for your note and concern. As of today, I am 27 days removed from surgery and 19 days removed from my hospital stay. 🙂 Yes, since about day 2 I have been exhibiting the energy to act more independently, however, in that zeal I have found myself at times, straining what little original muscle I do have around the right side of my abdomen. (The result of two liver transplants in 6 years.) So in the end I would say I have 90% good days but then get laid up for the other 10% for having done too much with the 90%.

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2 replies
JK | @contentandwell | Dec 30, 2018
In reply to @stella25 "Thank you so much Rosemary. Yes, my son has PSC. He was diagnosed a year ago...." + (show)
@stella25

Thank you so much Rosemary. Yes, my son has PSC. He was diagnosed a year ago. Took close to two years to get a proper diagnosis. Based on what we now know about the disease we are guessing he probably has had it at least 6 years possibly longer. He's 34 now and is stage 4 cirrhosis. The past month or so has warranted a couple of trips to the ER. A week or so ago his doctor suggested he is getting close to meeting with the transplant evaluation team. It is wonderful to hear success transplant stories such as yours! 10 years!! Wow, simply amazing:-) I will definitely keep the conversation going with you. Thank you again. Your generous offer is greatly appreciated by myself & my family.

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@stella25 most of us who have had cirrhosis and liver transplants have had other causes, but we too can help if you have questions not directly related to PSC, Rosemary knows so much about all of that, and is the expert on PSC. She was fortunate in not having HE episodes, whereas I did have them.

When I was finally diagnosed with cirrhosis after almost a year and a half of not knowing what my problem was, I went to a hepatologist. She said I probably had cirrhosis for 10 years, cirrhosis takes a long time before presenting itself. I had some vague symptoms that were not attributed to cirrhosis at all. So, it’s not unusual that your son had it for a long time also. I then realized that my shaky hands and diabetes started just around the time that the hepatologist indicated.

I had my transplant in September 2016 and have been doing well ever since. I hope your son becomes a candidate soon and doesn’t have to wait too long for a transplant.
JK

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1 reply
JK | @contentandwell | Dec 30, 2018
In reply to @mnemeth318 "Thanks @rosemarya for your note and concern. As of today, I am 27 days removed from..." + (show)
@mnemeth318

Thanks @rosemarya for your note and concern. As of today, I am 27 days removed from surgery and 19 days removed from my hospital stay. 🙂 Yes, since about day 2 I have been exhibiting the energy to act more independently, however, in that zeal I have found myself at times, straining what little original muscle I do have around the right side of my abdomen. (The result of two liver transplants in 6 years.) So in the end I would say I have 90% good days but then get laid up for the other 10% for having done too much with the 90%.

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@mnemeth318 it sounds as if you are doing great! You are like me though, when I feel good I tend to overdo and pay for that the next day. Try to keep a rein on that, and I hope you feel better every day.
JK

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jerrydrennan | @jerrydrennan | Dec 31, 2018
In reply to @rosemarya "Jerry, You have really been on a wild journey. I had no idea that all this..." + (show)
@rosemarya

Jerry, You have really been on a wild journey. I had no idea that all this was happening to you. I am relieved to hear that you are doing good now. I send my thoughts and prayers that your recovery continues on a positive path.

What a blessing to have such a niece! Carrie is a hero and a role model for all of us.
It is remarkable that you were still at the GOL and so near to Mayo St Mary's ER. It sounds as if that is another part of your miracle outcome.

Jerry, with all of that behind you, I fully expect you to have strong expectation for a Happy and Healthy New Year. Take it one day at a time, and keep on getting stronger. I am happy that you are following the conversations here on Connect, and as you get stronger, I look forward to hearing from you about your new life. I have a lot of questions that I would like to ask you, so don't stay away too long!

Are you at home now?

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@rosemarya
Yes I am blessed to have been at the GOL and that Casey was with me . I struggle with some side effects from the transplant and the hyplexia anemia. Or bleed. But being home is great and not feeling bad from chemo and a failing liver. I am going to follow connect and help where I think I can.
You and @contentandwell are the ones that are an inspiration to others .
Love and prayers
God Bless
Jerry Drennan

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2 replies
jodeej | @jodeej | Dec 31, 2018
In reply to @jerrydrennan "@rosemarya Yes I am blessed to have been at the GOL and that Casey was with..." + (show)
@jerrydrennan

@rosemarya
Yes I am blessed to have been at the GOL and that Casey was with me . I struggle with some side effects from the transplant and the hyplexia anemia. Or bleed. But being home is great and not feeling bad from chemo and a failing liver. I am going to follow connect and help where I think I can.
You and @contentandwell are the ones that are an inspiration to others .
Love and prayers
God Bless
Jerry Drennan

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@jerrydrennan your faith and attitude are an inspiration to me. I'm so glad we met!
Blessings,
JoDee

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 31, 2018
In reply to @stella25 "Thank you so much Rosemary. Yes, my son has PSC. He was diagnosed a year ago...." + (show)
@stella25

Thank you so much Rosemary. Yes, my son has PSC. He was diagnosed a year ago. Took close to two years to get a proper diagnosis. Based on what we now know about the disease we are guessing he probably has had it at least 6 years possibly longer. He's 34 now and is stage 4 cirrhosis. The past month or so has warranted a couple of trips to the ER. A week or so ago his doctor suggested he is getting close to meeting with the transplant evaluation team. It is wonderful to hear success transplant stories such as yours! 10 years!! Wow, simply amazing:-) I will definitely keep the conversation going with you. Thank you again. Your generous offer is greatly appreciated by myself & my family.

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Stella, It also took between 1 - 2 years for me to have a PSC diagnosis. I was just over 50 then.
I was 60 when I received my transplant from an anonymous deceased donor. And the time in between was a mix of ups and downs. I was also told by my GI when it was time to go to the liver transplant team for evaluation, and I was both comforted and frightened by that.
I know that we are a rare group, and that is how I found Mayo Connect. I wanted to meet someone else who had a transplant due to PSC.

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 31, 2018
In reply to @jerrydrennan "@rosemarya Yes I am blessed to have been at the GOL and that Casey was with..." + (show)
@jerrydrennan

@rosemarya
Yes I am blessed to have been at the GOL and that Casey was with me . I struggle with some side effects from the transplant and the hyplexia anemia. Or bleed. But being home is great and not feeling bad from chemo and a failing liver. I am going to follow connect and help where I think I can.
You and @contentandwell are the ones that are an inspiration to others .
Love and prayers
God Bless
Jerry Drennan

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Jerry, Now that you have received your transplant, I want to share this with you.
Self-Care Tips for Transplant Patients
https://connect.mayoclinic.org/page/transplant/newsfeed/self-care-tips-for-transplant-patients/

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 31, 2018
In reply to @mnemeth318 "Thanks @rosemarya for your note and concern. As of today, I am 27 days removed from..." + (show)
@mnemeth318

Thanks @rosemarya for your note and concern. As of today, I am 27 days removed from surgery and 19 days removed from my hospital stay. 🙂 Yes, since about day 2 I have been exhibiting the energy to act more independently, however, in that zeal I have found myself at times, straining what little original muscle I do have around the right side of my abdomen. (The result of two liver transplants in 6 years.) So in the end I would say I have 90% good days but then get laid up for the other 10% for having done too much with the 90%.

Jump to this post

mnemeth318, I am happy to hear that you are recovering well. It if fun, isn't it, to count the days past transplant surgery instead of days waiting? Like counting blessings and more blessings!
I like your 90% - 10% analogy 🙂 It is easy to be too eager as we wait for the body to play catch-up with the new energy and strength that come with a healthy organ. I still have a tendency to overdo and then I need to step back for a slowdown period. My husband is very watchful and he will remind me to 'take it easy' at times.

I want to share with you something that I like to share with new recipients. I guess you already know many of the tips, and might even be able to add a few (Consider this an invite to do so.)
Self-Care Tips for Transplant Patients
https://connect.mayoclinic.org/page/transplant/newsfeed/self-care-tips-for-transplant-patients/
Did you experience any difference with the 2nd surgery procedure vs the first surgery procedure and recovery? Was it an easier process or more difficult process for you?

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