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Liver transplant - Let's support each other
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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.
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@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?