Liver transplant - Let's support each other

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

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?

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💞💞

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

@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?

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

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!

Hello, I had a tips procedure done about 8 weeks ago. I was having weekly paracenteses done once a week. (about 7 liters each time) I wish I could report good news as a result but I am still gaining ascites and need to be drained about every 10 days. I keep my sodium intake at about 800 mg a day to try to combat it but that does not seem to make a difference.
A little bit about me. I am a 56 Y.O. male and in good health (besides end stage liver disease) My MELD score is a 13 and has been consistent throughout. I have completed all of the tests required by my transplant team. The TIPS was supposed to get my ascites under control so I could live a fairly normal life. The next step was supposed to be surgery on my umbilical hernia that is the size of a golf ball.
Because the TIPS did not work and I continue to have large volume ascites, they are talking transplant again.
I was told that even though my MELD is low there are other factors considered when it comes to a needed transplant.
Anybody else have similar experience's? I am trying to hold on to hope and keep a positive outlook but it is getting difficult.

@cybele65, As you are learning, this road to transplant can be complicated. And there is not one experience that is like another in the progression of liver disease and advancement toward transplant. However, we all experience the dread and anxiety that we face. You are absolutely correct to make your commitment to hold on to hope and strive to maintain a positive outlook. Your good health is going to be working on your favor as you proceed.
I did not have a TIPS procedure, but had repeated parentheses every 8-10 days. I wore X-large sweat pants with a cinched draw string on those days after paracentesis.
It is a step in the right direction to hear that your transplant team is considering other factors that can affect the MELD score.
I was 60 when I received my transplant in 2009. I had a progressive liver disease Primary Sclerosing Cholangitis (PSC) for which there is no cure. I knew that a transplant could be in my future, but it wasn't real until I was sent to the Transplant department when my symptoms and liver function numbers began a sudden rise. My MELD score wasn't too high when I was listed, but it rose quickly as my disease progressed and my health began to fail. I endured many complications along the way. Like you, I had been a healthy and active individual with no comprising conditions. My doctors credit that with helping me along the way.

Upon looking back at an article that I wrote in 2017, I found this statement: "For me, staying positive meant that I had to accept the ever-changing events in my life, one long day at a time." I am sharing the link to "Staying Positive While Waiting for a Transplant" https://connect.mayoclinic.org/blog/transplant/newsfeed-post/staying-positive-while-waiting-for-a-transplant/

cybele65, Do you have friends or family nearby to support you? Have you got someone in mind to be a caregiver which is required when listed for a transplant?

I have a strong support system in place. My wife has been a rock and her sons are there for me whenever I need something. My neighbors have also told me they will be there for me, all I need to do is ask. Thank you for taking the time to write me back. A lot of people know of my condition, having said that, they really do not understand the physical and emotional affects on me. Unfortunately most people hear cirrhosis or liver disease and they automatically think I am a drunk and did this to myself. Mine was caused by a prescription medication. I will check out the link, thanks for sharing it.