Liver transplant - Let's support each other
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?
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I am able to get around but it feels like I am walking on a cushion of water. I had another paracenteses yesterday because I gained another 6 pounds in less that a week. They took off 5.8 liters and said I had significant edema. The swelling went down in my feet today and I was able to knock a lot of things off my to do list. However, after a busy day my feet are starting to swell again. I do not understand why people would want the TIPS procedure if the only thing it does is divert fluid from the abdomen to the legs and feet. At least the fluid can be drained from the abdomen if it had just been left alone. The doctors said that for a lot of people the ascites goes away altogether. I must not be one of those lucky people.
@cybele65, I nearly died from bursting varices that I had tied off. These were repaired. A day after I was released from the hospital they burst again. I was again helicoptered up to the regional hospital, intubated, and went through hours of surgery to try to stopped the upper GI bleed caused by cascading bursting varices. I was brought back to ICU and awakened long enough to be told I would bleed to death if I didn’t have the TIPS procedure.
The procedure saved my life. It does much more than divert fluid. It stops varices from forming in one’s esophagus that may burst and cause internal bleeding.
Hey there woman! It’s so good to hear from you! Glad you have antibodies to Covid. You missed my dreadful bout with Covid. I’m supposedly protected now for 3-6 months from the monoclonal antibodies I received. I now walk into my public facing office, double masked 😷, close my door, turn on my new air purifier, and remain masked. Ugh.
Perhaps this summer we can meet halfway (CT?) for coffee!
Be well! Athena
I couldn’t fit into my shoes and went from size small to stretchy large pants! Never having been pregnant, I had new found respect for all moms and what they go through to carry a baby in their belly!
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!
Your the best mentor Rosemary and I truly appreciate you! I had my labs taken on Valentines Day too. My awesome new liver is perfect! I get to reduce Tacrolimus to 2 mg AM & PM!! 👏👏👏
Oh no! U poor baby..thank God u recovered😊yes CT sounds good..I too wish and can't wait till we let upon the masks....stay well
I am so happy that you survived that horrible ordeal. I do not mean to sound ungrateful in these posts, I am just very frustrated. I am aware that one of the main reason for a TIPS procedure is to combat varices and bleeding. That was not why I had mine, I have low blood pressure and had no sign of varices. The reason I had mine was because of large volume ascites. I was getting drained once a week of about 8 liters per week. (sometimes up to 10 liters) The transplant team decided that TIPS was my best option as it could stop the ascites completely. My frustration is that now I still have ascites plus edema that I did not have before.
My apologies @cybele65, I do know we all have our different health circumstances and I should have recognized yours. I know how miserable ascites are, so you definitely have my sympathies. Your gastroenterologist doesn’t have any solutions for your situation?
@cybele65, I had ascites and edema before transplant. I wish I could offer some relief to you. I recently looked at my pre transplant notes that I kept, and I saw where at one time I had gained 7 1/2 inches around my waist. That was my 1sr paracentesis procedure. I needed repeat procedures up until my transplant. Walking became difficult for me, too. The best part that I made myself focus on, was the immediate relief after each draining, and the looseness of my extra large sweatpants.
Do you have to go any distance to get a paracentesis? Are they easy for you to schedule?