Liver transplant - Let's support each other

Thanks .yes I see the words photo I shall try tomorrow

Jackie, when you want to make a comment or a reply, in addition to text, you have option to Add photo/Files. So go ahead and click on that box and you will see an area that says “add your photos here”.
If you click there, you can select your photo from your files, or even take one. *You will get a notice if image will not fit. Otherwise it should download.
I’m texting while husband is driving. I hope this makes sense! Let me know if you need more help.

Hi again my test in April is for my 6mo ck up.i will see what they say after test when to come back. I don't know how to post pictures..sorry..if u lead me I will follow directions....

@jackie421blfdgurl, I almost missed your post because I don't go by Rosy😉. Anyway, Your enthusiasm says it all! We are blessed after having been gifted with a life thru organ transplant.
Is the April trip to New York part of your routine follow-up care? I have graduated from a 1 month routine lab to a 3 month schedule. And my friends are so jealous of the complete follow-up care / monitoring that I receive from my PCP and my transplant center!

Have you seen this discussion: Snapshots of hope: Life on the other side of transplant. Will you join me and others to "Show me your Snapshot of hope! What photo do you have that wouldn’t exist without your transplant? Do you have a snapshot or a few words to share there?
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

Hi Rosy girl. Hope all is well. I just read your reply u are amazing .I am good. Going for my blood on Saturday..I go once a month per doctors.Going to New York end of April for ct scans and MRI...each day is a gift
And no one knows this better than us transplants....have a great day🌞🌞jackie

Hello. In October 2022 it will b 2 yr anniversary for my liver transplant. Then in June of last yr, I had a hernia repair.So I guess to say I went thru heaven and hell and thankfully back to heaven. When I told some people of my transplant they looked so surprised! Yes u r right it is a disease that is stigmatized
Almost makes u embarrassed to tell people u had one...no I did not drink..no I did not do drugs .no I did not have hepatitis.it was nash undiagnosed for years and it kept getting worse n worse top of that my doctor ignored my symptoms for years. Now I tell everyone and am so proud. My medical team at Mt.Sinai was and is remarkable. Hang in there they know what they r doing. U will b fine. God bless u ....jackie

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.

@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?

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.

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!