Cirrhosis of the Liver: What to expect when waiting for a transplant?
Hello - This is my first time to do this; however, I'm looking for some possible advice. I am 54 and have always been very healthy. I started feeling bad back at the end of May when I decided to go to an Urgent Care center to be looked at. They took blood and when I received the results, it said that my Liver levels were in critical state and to go see a Dr. I did. They took more blood, did an Ultra Sound (which was normal), did a CT scan and did a Biopsy. The results: Stage 4 cirrhosis of the Liver. They have no explanation as to how I got it. I don't drink, it's not hereditary and I'm not over weight. It's now November. They referred me down to a larger University Hospital to see a better specialist; however, I cannot get in until Dec. 8th! I am scared! How long can I last waiting to be seen? What should I do in the mean time? I did some reading and I have cut almost everything out of my diet and with that, I am feeling a whole lot better but I know I still need a Transplant and need to get in. I'm (and my husband & family) are going crazy waiting. Would really appreciate and and all help. Thank you!
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I just had an MRI ELASTOGRAPHY and it showed stage 4 Fibrosis. Dr's PA called and said you need to see Hepatologist. The Hepatologist was away and I am scared also. I read this is a terminal illness. I live in NY. I have reached out to another hospital and the earliest date is May 26th. I am also besides myself. I have several autoimmune disorders, GI, and Neurological. I had my gallbladder removed and I read this can cause scarring of the liver. I also wrote to the Mayo Clinic in Florida to see if they can help. Awaiting a call back. I have terrible left sided pain. My mom died of Colin Cancer. I'm really scared. Try and see if any other good hospital can rake you. My liver enzymes have always been slightly high. Prior CT scan 2017 showed possible Chirrosis, but said to correlate with liver enzymes. My liver should have been checked yearly This is a silent disease. I'll pray for you
Did you need a transplant. I am so scared, as I am newly diagnosed. I just pray
Who do you ask to be included in the National registration of liver recipients?
I live in NY. Did you try NY Presbyterian Hospital or Mt. Sinai? I am also trying to book an appointment in Florida, not sure if I can move, but I would certainly try if the opportunity came my way. I wish you the best
I have congenital hepatic fibrosis. This disease was diagnosed 15 years ago, and has led to many different procedures such as TIPS and emergency room visits with bacteria infections. I did at one time enjoy a glass of wine or a cold beer after working in the yard, but obviously no longer. YOU are not alone in this journey. The mental aspect will wear on you or the fear of not knowing when the next emergency room visit will happen. I try and stay focused on the positives, thankful to be here and contributing to society -working, family, and friends. The transplant may some day come, although my MELD is low, but we must continue to be as healthy as possible-physically and mentally.
Call Mount Sinai, when we were looking at transplant hospitals in NY, they were able to accommodate us with an appointment quickly. We know someone who had a liver transplant there and they were very happy with the care they gave. We have a home in Florida and decided Mayo would be better for us. We waited about a month for our first appt.
Please find a hepatologist who specifically specializes in liver cirrhosis and transplantation.
How was your TIPS procedure? Did it help you? My husband has cirrhosis and decompensated liver. His ascites is bad I has hoping a TIPS procedure would help him. The last draining they got 8 liters. Thank you
Yes, I received both a liver and kidney February 10th 2021, and a second kidney transplant on November 12th that same year. First kidney let me down. Don't be scared, let the lord take your hand, he will walk you through both the good and the bad. Just take a deep breath and be patient. I know it sounds easy, but remember I am talking from experience.
God bless you on your journey 🙏
I was referred. I have to call his office and make an appointment.
Thank you for your suggestion.
When does transplant come into the picture?
Thanks!