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.

btg | @btg | Jan 25, 2022
In reply to @athenalee "Welcome to Connect @btg! I had my liver transplant in August 2020. I discovered Connect about..." + (show)
@athenalee

Welcome to Connect @btg! I had my liver transplant in August 2020. I discovered Connect about a year ago. It’s a remarkable supportive community. Sounds like you’re in good hands with your wife, though!

As you continue along your journey feel free to reach out, ask questions, share your concerns, etc. We’ve been where you are! I know I’ve learned a lot from the Connect community. There are many beneficial discussions and blogs in the Transplant Group.

Have you met with your Mayo Transplant Team yet? Or, is this your first trip?!

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Hi there. My transplant Doctor here is the one that has been working with me to get all the testing complete so that I can make the first trip. From what he said, we will initially be out there for about a week and a half for Mayo to complete their tests and more labs before my case is put up for review. So, we still have a little way to go.

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btg | @btg | Jan 25, 2022
In reply to @rosemarya "@brg, Hi Bryan, welcome to Mayo Connect. I hope that your testing will soon be finished..." + (show)
@rosemarya

@brg, Hi Bryan, welcome to Mayo Connect. I hope that your testing will soon be finished and that you can get on the road to Mayo where you can learn if you will be a candidate for transplant. My transplant was in 2009 at Mayo Rochester. I know from my experience with Mayo transplant team that you will receive expert care before, during, and after your transplant.
You mention that your transplant Doc says to get there soon. Is your Doc at Mayo? Are you scheduled for an appointment yet?

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Not scheduled yet as I have a few more tests to complete here first, then off to Mayo for them to make a decision on when.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 27, 2022
In reply to @btg "Hi Gaylene, my name is Bryan and I’m finishing up testing to hopefully get listed. We..." + (show)
@btg

Hi Gaylene, my name is Bryan and I’m finishing up testing to hopefully get listed. We live in California but are planning on choosing Mayo Phoenix. Our coverage provides lodging at a place like the Residence Inn in Scottsdale but we are thinking about the option of an Airbnb so I’d be curious to know what you learn.

To everyone, hello! My MELD is at 26 right now and I have a few tests left but hoping based on what my transplant Doc says to get out there soon. We shall see. Regardless, I’m thankful to find this group to learn from. My Wife is a medical professional so she helps me understand the numbers and tests, but the actual experiences from all of you are a found blessing. So thank you.

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@btg, It is stressful to plan for traveling and lodging while going for extended medical appointment. I have some information to share with you as you begin your planning.

Mayo has a free Concierge Service with information for all 3 Mayo Campuses. The staff at the concierge desk can help with hotel/lodging recommendations. Here is how you can contact them:
* Phone: 507-538-8438
* Live Chat: https://www.mayoclinic.org/patient-visitor-guide
* Email: concierge@mayo.edu

Here is a discussion in the Visiting Mayo Group where you can chat with others about their Arizona lodging interests.
Your travel tips for Mayo Clinic in Phoenix and Scottsdale please
https://connect.mayoclinic.org/discussion/how-to-travel-phoenix-scottsdale-clinics/

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marinab | @marinab | Jan 28, 2022

Hello, My husband is listed for a liver transplant but chances are rare where we live. Doctors have recommend TIPs to help him deal with his accute ascites for a better quality of life. Wondering if anyone in this group has had TIPs and has it helped. We do understand that a possible side effect of TIPs is HE particularly at the start when the body is getting used to the new way of processing the blood. Any comments would be most appreciated! Also asking this Group's Admin for any comments or advice. Thank you!

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 28, 2022
In reply to @marinab "Hello, My husband is listed for a liver transplant but chances are rare where we live...." + (show)
@marinab

Hello, My husband is listed for a liver transplant but chances are rare where we live. Doctors have recommend TIPs to help him deal with his accute ascites for a better quality of life. Wondering if anyone in this group has had TIPs and has it helped. We do understand that a possible side effect of TIPs is HE particularly at the start when the body is getting used to the new way of processing the blood. Any comments would be most appreciated! Also asking this Group's Admin for any comments or advice. Thank you!

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@marinab, Welcome to Mayo Connect. I am sorry to learn of your husbands ascites, and glad to see that his doctor is offering him a procedure to help with his quality of life while waiting for a transplant.
I am a transplant recipient and I had ascites prior to my transplant, but did not have any procedure except for paracenteses. I felt miserable, and walking became difficult and my clothes didn't fit. I had PSC (Primary Sclerosing Cholangitis) and I don't know if that particular diagnosis made a difference with my treatment.

Here is a discussion about TIPs where you lcan meet others who have had the TIPs procedure.
Liver transplant: TIPS (transjugular intrahepatic portosystemic shunt)
https://connect.mayoclinic.org/discussion/liver-transplant-2/
Marinab, Where do you live that you say that your husband's chances for a liver transplant are rare? Has he considered a living donor?

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2 replies
Lou | @lcd | Jan 28, 2022
In reply to @marinab "Hello, My husband is listed for a liver transplant but chances are rare where we live...." + (show)
@marinab

Hello, My husband is listed for a liver transplant but chances are rare where we live. Doctors have recommend TIPs to help him deal with his accute ascites for a better quality of life. Wondering if anyone in this group has had TIPs and has it helped. We do understand that a possible side effect of TIPs is HE particularly at the start when the body is getting used to the new way of processing the blood. Any comments would be most appreciated! Also asking this Group's Admin for any comments or advice. Thank you!

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I had TIPS 14 years ago to relieve portal pressure (numerous bursted varices and banding) and thankfully no issues at all. I fortunately have not had any infections in that area or any adjustments to be made. Yes, I am glad we did that, and it has "bought" me more time until my eventual transplant.

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3 replies
digibson | @digibson | Jan 28, 2022
In reply to @lcd "I had TIPS 14 years ago to relieve portal pressure (numerous bursted varices and banding) and..." + (show)
@lcd

I had TIPS 14 years ago to relieve portal pressure (numerous bursted varices and banding) and thankfully no issues at all. I fortunately have not had any infections in that area or any adjustments to be made. Yes, I am glad we did that, and it has "bought" me more time until my eventual transplant.

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You have had Cirrhosis for over 14 years? May I please have some details?

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1 reply
Lou | @lcd | Jan 28, 2022
In reply to @digibson "You have had Cirrhosis for over 14 years? May I please have some details?" + (show)
@digibson

You have had Cirrhosis for over 14 years? May I please have some details?

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I a have hereditary issue with my liver. Slower process than most. I wanted to let you know that TIPS can be very successful.

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2 replies
marinab | @marinab | Jan 28, 2022
In reply to @lcd "I had TIPS 14 years ago to relieve portal pressure (numerous bursted varices and banding) and..." + (show)
@lcd

I had TIPS 14 years ago to relieve portal pressure (numerous bursted varices and banding) and thankfully no issues at all. I fortunately have not had any infections in that area or any adjustments to be made. Yes, I am glad we did that, and it has "bought" me more time until my eventual transplant.

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Thank you so much - it's reassuring to hear this during out decision making process.

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marinab | @marinab | Jan 28, 2022
In reply to @rosemarya "@marinab, Welcome to Mayo Connect. I am sorry to learn of your husbands ascites, and glad..." + (show)
@rosemarya

@marinab, Welcome to Mayo Connect. I am sorry to learn of your husbands ascites, and glad to see that his doctor is offering him a procedure to help with his quality of life while waiting for a transplant.
I am a transplant recipient and I had ascites prior to my transplant, but did not have any procedure except for paracenteses. I felt miserable, and walking became difficult and my clothes didn't fit. I had PSC (Primary Sclerosing Cholangitis) and I don't know if that particular diagnosis made a difference with my treatment.

Here is a discussion about TIPs where you lcan meet others who have had the TIPs procedure.
Liver transplant: TIPS (transjugular intrahepatic portosystemic shunt)
https://connect.mayoclinic.org/discussion/liver-transplant-2/
Marinab, Where do you live that you say that your husband's chances for a liver transplant are rare? Has he considered a living donor?

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Thank you so much ! I will check out the TIPs discussion group. We live in Hong Kong - while they have excellent liver facilities, the culture here does not see living donors. And we don;t have any family who would qualify or be willing, so we are waiting patiently in line which could be a long way away as he is not on the priority just yet (in a way thankfully!). TIPs was recently recommended tohim and we are weighing up the pros and cons. Like you, his ascites is very challenging and he currently goes in every 5-6 weeks for paracenteses. He also has inguinal hernia as a result which is very uncomfortable but they say they cannot repair this until his ascites is resolved as it will only come back.

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