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.

@rosemarya

@marinab, I want to let you know that I am thinking about you across the miles. Has your husband been able to get any relief from his ascites with repeat paracenteses? Have you heard anything about when the TIPS procedure might be scheduled?
How about you? As a caregiver, your health is equally important as your husband's. What is it like for you? And how can we on Connect support you?

Jump to this post

Thank you for your kind thoughts @rosemarya . Still no news of when the TIps might be scheduled as there is still a covid surge here in Hong Kong so all elective surgery has been postponed. Hopefully we will hear when we have a follow up with the liver specialist end March. He did have his 6-week paracenteses on March 3 - 15 litres! The current issue is that he also has inguinal hernia which bothers him a good deal but we understand that that cannot be fixed until his ascites is minimized. I am doing fine as hubby doesn't need much help from me other than morale support and making sure he eats right. He has a very positive attitude, independent and never complains. I am lucky to have the support of my family and we speak daily even though they live in other countries. Currently we have covid restritions so friends are not socializing but we keep in toucb on calls and zoom. I also have a passion for walking and Hong Kong has beautiful mountain and harbourfront hikes at our doorstep (see photos). I aim at 10km-12km a day and also do meditation on my walks.. Rest assured I will reach out if I need Connect suport. Thank you again sinerely!

REPLY
@btg

Update for you. I have completed everything required for the transplant team here to discuss my case for referral to Mayo. There is a good chance that I’ll be out there in the next few weeks! Through all the tests, with the exception of my liver, everything else is healthy, strong and good. Looking forward to this journey and pray everyday for a good result and a healthy recovery. Thank you for keeping in touch, Rosemary, it is very much appreciated. So glad I found this message board to be able to learn more about the process and for the support that I have received. Be well and safe, wish me luck!

Bryan

Jump to this post

Great news, Bryan! Please keep posting updates along the way.

REPLY
@marinab

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.

Jump to this post

@marinab, I want to let you know that I am thinking about you across the miles. Has your husband been able to get any relief from his ascites with repeat paracenteses? Have you heard anything about when the TIPS procedure might be scheduled?
How about you? As a caregiver, your health is equally important as your husband's. What is it like for you? And how can we on Connect support you?

REPLY
@rosemarya

@btg Brian, I am soooo happy to hear good news about your progress. And you are absolutely correct that your good health is going weigh heavily in your favor as you look forward to eventual listing and surgery. My advice, if you were to ask, is to stay active and eat healthy foods.
I hope that gentle breezes will be with you as you set sail!
Brian, please send updates.

Jump to this post

Update for you. I have completed everything required for the transplant team here to discuss my case for referral to Mayo. There is a good chance that I’ll be out there in the next few weeks! Through all the tests, with the exception of my liver, everything else is healthy, strong and good. Looking forward to this journey and pray everyday for a good result and a healthy recovery. Thank you for keeping in touch, Rosemary, it is very much appreciated. So glad I found this message board to be able to learn more about the process and for the support that I have received. Be well and safe, wish me luck!

Bryan

REPLY
@rosemarya

Hi, @jackie421blfdgurl, this is it! You are part of the virtual meeting by participating in the discussions here on Connect. It is a virtual coffee table conversation, so imagine all of us gathered in comfortable location sipping our coffee and chatting. I wish we could come to Connecticut, but virtual is just more convenient for all of us.
Jackie, For some reason I keep thinking that you have an anniversary of your transplant coming up. I did not see anything on your profile when I looked.
How to Add and Edit My Profile
https://connect.mayoclinic.org/help-center/#add-edit-profile
Will you be celebrating a transplant anniversary soon?

Jump to this post

Hi girl...anniversary in October .2 years and I do finally feel great..
After all that time. Tell me when and how to get together with our coffee or a gin n tonic in the web..kisses to all💞💞

REPLY
@jackie421blfdgurl

To rosemary's..this is Jackie but u knew that haha.what is this virtual meeting all about I would love to b a part of that..or I was going to say u are in charge of getting the bus and we all meet in Connecticut and raise some hell..woopie!!!!

Jump to this post

Hi, @jackie421blfdgurl, this is it! You are part of the virtual meeting by participating in the discussions here on Connect. It is a virtual coffee table conversation, so imagine all of us gathered in comfortable location sipping our coffee and chatting. I wish we could come to Connecticut, but virtual is just more convenient for all of us.
Jackie, For some reason I keep thinking that you have an anniversary of your transplant coming up. I did not see anything on your profile when I looked.
How to Add and Edit My Profile
https://connect.mayoclinic.org/help-center/#add-edit-profile
Will you be celebrating a transplant anniversary soon?

REPLY
@rosemarya

@btg Brian, I am soooo happy to hear good news about your progress. And you are absolutely correct that your good health is going weigh heavily in your favor as you look forward to eventual listing and surgery. My advice, if you were to ask, is to stay active and eat healthy foods.
I hope that gentle breezes will be with you as you set sail!
Brian, please send updates.

Jump to this post

Thanks, Rosemary. I do exercise six days a week, usually 1.5 to 2 hour walks as early as I can in the morning. Per my Doc, my diet is fairly strict as my sodium level is still low, but, I can have cheat days. Tonight, is my cheat night! Still eat healthy but it tastes better, and some ice cream later.

See, there are already things to look forward to.

Be well and safe,

Bryan

REPLY
@btg

Hi Rosemary, sorry so long to get back to you. I have two tests here left at home as well as some dental crowns to be finished. After, we’ll meet with my liver Doc here and see where are. Hope to set sail for Mayo in April, God willing! I feel great, which is good. The other good news is that with all the tests I’ve already been through I am otherwise very healthy. Strong heart, lungs and kidneys are great. Hope this weighs in my favor but I have no idea. We shall see!!

Thank you for reaching out, very much appreciated.

Bryan

Jump to this post

@btg Brian, I am soooo happy to hear good news about your progress. And you are absolutely correct that your good health is going weigh heavily in your favor as you look forward to eventual listing and surgery. My advice, if you were to ask, is to stay active and eat healthy foods.
I hope that gentle breezes will be with you as you set sail!
Brian, please send updates.

REPLY
@rosemarya

2022 has already been busy in this group. I might need to add some extra chairs around our virtual table chat!
This morning, I decided to bring you who posted in January together to meet each other and to extend invitation to anybody reading this! You are always Welcome.

@btg, How's the planning for testing going? Has it been scheduled yet?

@marinab, Your husband was in the process of deciding on the TIPS procedure. Has he made any decision? How is he doing?

@lcd, Just checking in to say, Hi. Thanks for the positive vibes! Any updates that you want to share?

@digibson, I hope that you are doing okay. What is the transplant team saying about a liver transplant in your future?

@cybele65, How are you feeling after your recent TIPS procedure? Are you noticing any decrease in ascites

@lauraloo81, I'm happy that you have recently joined us on Connect! Do you have anything fun planned for today?

@athenalee, Thanks for sharing your wisdom and positivity to the discussion.

Me - What am I up to: I had my routine labs drawn yesterday. A treat that my husband and I allow ourselves is a stop at local bakery!! Yummy way to start yesterday Valentine's Day. Did you know that yesterday was Donor Appreciation Day?

Jump to this post

Hi Rosemary, sorry so long to get back to you. I have two tests here left at home as well as some dental crowns to be finished. After, we’ll meet with my liver Doc here and see where are. Hope to set sail for Mayo in April, God willing! I feel great, which is good. The other good news is that with all the tests I’ve already been through I am otherwise very healthy. Strong heart, lungs and kidneys are great. Hope this weighs in my favor but I have no idea. We shall see!!

Thank you for reaching out, very much appreciated.

Bryan

REPLY
@athenalee

Mr best wishes to your husband on getting the TIPS procedure. Please let us know how things go for him. And, thank you for being a wonderful caregiver!

Jump to this post

To rosemary's..this is Jackie but u knew that haha.what is this virtual meeting all about I would love to b a part of that..or I was going to say u are in charge of getting the bus and we all meet in Connecticut and raise some hell..woopie!!!!

REPLY
Please sign in or register to post a reply.